20 Aug 2019

Getting stronger with EMSCULPT, the no-pain, muscle-building, fat-loss medical device*

*In collaboration with S-Thetics, Beaconsfield.
Getting stronger with Emsculpt

My husband is super-fit, works out most days with weights and the odd run. But although I have a chronic pain condition, I've recently done far more sit-ups in half an hour than he - or anyone - could ever dream of. Twenty-thousand to be precise.

While I let that sink in, I’ll admit, it wasn’t under my own steam. I've used medical technology for my abdominal muscles to benefit from the physical effects of the equivalent of 20,000 sit-ups and without actually moving myself.

Intrigued? Who wouldn't be?

Lack of body strength

In recent years I’ve found myself with a bit of a problem. I have a structural weakness in my back thanks to Ehlers Danlos syndrome, but repeated abdominal surgeries have decimated my stomach muscles, leaving me with a dangerously weak upper body.

The result has been regular episodes of my back giving way, with my weak abs leaving me crawling on the floor, unable to hold myself up. One recent, memorable incident meant my husband and son had to roll me, shrieking, onto a large drawing board to carry me to bed.

Something had to change - but my EDS and PoTS preclude me from doing sufficient - or really any - exercise. Even standing up still for long can be a challenge.

Then I came across something that changed my life.

Magical muscle machine

The answer was EMSCULPT. This miracle medical device makes you not only stronger but also slimmer in just four sessions of half-an-hour each. I was introduced to it by Miss Sherina Balaratnam at her multi-award-winning medical aesthetics clinic, S-Thetics, in Beaconsfield, Buckinghamshire.

I'm a huge fan of S-Thetics and have had a number of beneficial and life-enhancing treatments there previously.

This video I've put together explains what it’s done for me - and could do for you.

*I received this particular session of EMSCULPT courtesy of S-Thetics Clinic.
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18 Sept 2018

A sharper look with EndyMed's V-shaped facial treatment

EndyMed V-shaped

The paradigm of the older 'invisible' woman has now been demolished, as business leaders, movie stars, musicians and supermodels are showing the world that vitality, relevance and beauty do not end at 40, 50 or above.

We may tell ourselves that for people like Kylie (Minogue), Nicole, Sandra, Cindy, Sharon, Meryl, etc, looking good is part of their job. But whatever your lifestyle, time constraints or bank balance, taking care of yourself should be taken seriously, whatever your age.

In the last few years since I've been living with chronic pain, I've tried to help myself by taking up meditation, giving up eating meat, drinking more water and stepping up my skincare. None of it takes too long and, for me, looking my best gives me an 'armour' to face the world. It also plays a vital role in supporting my mental health.

The life experience that comes with being older is something to be cherished. But I've discovered you don’t need to resort to drastic measures if you feel you the mirror isn’t reflecting back how you still feel inside. There are new, non-invasive, clinical facial treatments that you can have in your lunch-hour. I think of them as a 'facial plus'.

I’ve written about EndyMed 3DEEP before and how it restores the skin's elasticity that the young take for granted. Now there’s another tool in the EndyMed kit – a V-shaped head that is specifically for the jawline – it’s the enemy of emerging jowls and the secret weapon of many mature celebrities of both genders (note, it's not suitable for everyone - you'll need a consultation first).

I’ve been lucky enough to be invited back to Miss Sherina Balaratnam’s award-winning clinic in Beaconsfield to try it out. Here's the short video review I made about it...

See the other videos I've done with S-Thetics here
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31 May 2017

EDS Awareness: Coming to terms with chronic pain

Coming to terms  with chronic pain

As ever, My EDS Awareness month post sneaks in on the last day of May. It's been a big month, including a short, but amazing, trip to Barcelona to celebrate my and my husband's 50th birthdays (wtf?!). His was in April and mine is on 6th June (666... really rather fitting.)
I wasn't sure how I would manage it, given the uncertainties of my Ehlers-Danlos syndrome, but we had booked assistance at the airport and the train station and I took my own wheelchair.
The weather was perfect for me, warm, but not too hot for walking/wheeling around the very accessible city, visiting the wonderful architectural sights of Gaudi, including the incomparable Sagrada Famiglia, the stunning mosaic quirkiness of Park Güell and the stirring originality of La Pedrera and Casa Battló. It made my heart sing and I felt so alive and joyful to be there.
At Gaudi's Park Güell
Because of the limitations that Ehlers-Danlos syndrome places upon me, I had carefully planned the trip to include rest times, using taxis to get around so as not to use precious energy on getting between destinations. Slow walking with a stick, lots of breaks to watch the people go by and an afternoon rest while my husband visited the Picasso Museum were all factored in. Still, by the last day, I was exhausted and had to take to my wheelchair with the planned visit to Montjuïc being left for a future visit.
It's not how I used to go on holiday pre-illness but, after four years, I feel I have come to terms with structuring my life around it.


It took more than two years to come to the realisation that this is how my life now is, restricted, stilted by fatigue and, if I forget to take my pain meds, in agonising pain. I had to decide if I was going to be angry that this had happened, or to accommodate it as an unwelcome guest, planning your life around their convenience.
At the same time, the years were inexorably moving forward, my children would soon both be adults and no longer so reliant on me. And, as I began staring down the barrel of 50, I have had to decide what kind of life I wanted to have, given what I was physically able to do.
I have seen any number of YouTube and Instagram videos of young women with EDS talking or complaining about their conditions; they're hard to watch and I'm grateful that my own illness didn't blow up until much later in life. Although I was always plagued by various bodily pains, digestive problems, dizziness and so on, I had no diagnosis and I wasn't a regular joint dislocator. I just got on with it. I was lucky.

But coming on, as it did, just after I was getting back into working after caring full time for my autistic sons was a huge blow. Realising it was here to stay plunged me into depression, always something that has clung to my event horizon, never quite able to escape completely.


One of the problems with EDS is that it can become a vicious circle of debilitation. You are tired and faint and in pain so you don't - can't - move about much. As a result, your body becomes weaker and "deconditioned". It is the cruel partner of any chronic illness.
At my age, this was even more of a danger that had become my reality. Going anywhere took extreme effort and the payback was several days in bed just to get back to the usual poor state.
It was going on the RNOH Stanmore Hypermobility Rehab course that gave me the confidence to start to try to push myself a little bit more. Armed with skills for pacing (that came in very useful in Barcelona) I began to look at my work schedule to try to ensure that I had energy for both the things I wanted to do and the things, like caring for my boys, that I needed to do.

Serendipitously, I found a fitness expert who now also has a diagnosis of EDS. She puts me through weekly (or so) gentle one2one Pilates using a Reformer and, over time, my strength has built up to a level where I can go to a meeting in London and take a bus from the train station, if there is a stop within a few metres of my destination. It's a big money saver from always needing a taxi, although it does exact a greater physical toll. Of course private Pilates is a financial investment that not everyone can afford. Once again, I'm lucky.
Taking up mindful meditation, stopping eating meat and developing a keener understanding of myself, via my own autism diagnosis, have all helped. It's important to do my best to ensure that I, and not Ehlers-Danlos, am in control of my future.


Although my caring duties are far from over, I have reached a point where they are not as all-consuming as they once were. In theory, I have more time to find or create work and earn money.
Luckily, again, over these years, I have developed my special needs website, worked as a volunteer and honed my skills as a social media specialist for social good. Mostly from my bed. But is this what I want to do for the next 20 years?
50 is nothing to be afraid of; it is a time, for many, of new freedom from parental duties if you've had your children by your early 30s.
But of course, Ehlers-Danlos doesn't like to release its grip quite so easily. Just because I've reached a turning point in age and mental strength doesn't mean it's going to pack its bags and bugger off. I may have learned to accommodate its threatening ever-presence, but I am mindful that it is always a precarious balancing act. One missed or too-late dose of pain meds, too little movement because I'm not feeling well, eating something my EDS digestive system doesn't like or just doing too much (what is too much varies daily), can destroy the delicate equilibrium I have acquired. Even emotional upset or stress can tip the scales into a flare up.
But I never forget that despite all these challenges, I am lucky to be where I am right now. Ehlers-Danlos syndrome is a greedy bastard. It knows that no matter how hard you work to regain strength, one slip and it will have you back in its painful embrace.


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17 Jan 2017

Farewell, dear uncle, for you were the best of us.

And so farewell Uncle Ray, farewell.
Though we shared no blood, I knew you every day of my life that I can remember, and then some. You grew up next door to my mum, a friend from as soon as she could boss you about, though in a nice way, I'm sure 😉.

You were mad about trains, a passion that stayed with you for life. You are in my earliest memories when, as a child, I would regularly pop next door for some pop and to visit. When staying at my beloved Gran's house, I would wave good morning through our respective kitchen windows that faced each other at the back of the terraced houses in a working class suburb of Manchester.
Backing on to cobbles, many of the yards ended in a narrow path beside the length of an asbestos-built garage, including yours and my Gran's. Small surprise then, I suppose, that you succumbed to lung cancer, even though you were never a smoker.
You lived with your mother until middle-age. I barely remember your father but you stayed in your childhood home, helping your mum, my gran, my mum, countless others, through your electrician's skills.

You married late, to the sister of a former fiancé of my mum's she had introduced you to. Rosemary had two daughters already and you took to fatherhood as you did with everything, with dedication, loyalty and steadfastness. They called you Dad, loved you easily and their children were your grandchildren.

It was a life of two halves and I wasn't around for much of your married life, other than visits at Christmas and whenever.  When I had my children, you excitedly took them up to your loft where  you had constructed a boy's dream of train sets; for that alone you took on hero status, let alone the chocolate on the Christmas tree always waiting for them as it had always been each year for us. You never forgot a birthday or Christmas, complete with a cheque or crisp note tucked inside.

Through it all you were cheerful, stalwart, helpful and there. You were there.
When my Grandad died unexpectedly, in front of my 12 year old self and my Gran, you were there. When my Gran died, equally unexpectedly, you were there. When my mum got ill with cancer, you were there. When her husband died, you were there. When she died later the same year, you were there for me and especially my sister in the months before and after as she cared for my mum and cleared the house. You were there for good times too of course, it's just that who stood by you in your difficult times are the ones you remember most. Your passing is the end of an era for me, the last link to my Gran.

I know they were there waiting for you when you passed. My mum, my Gran and Aunty Dear, your mum, whose poor feet I seemed to trip over so often as a child, that as soon as I stood up my Gran would call out, "Mind Aunty Dear's feet, Tania!"
I can't speak much for your life as a family man, other than to know that you loved, and were loved, by all.
You were the best of men, Uncle Ray. Quiet, unassuming, cheerful with an understated charisma that led to today's packed crematorium full of people whose lives you touched and who held fond memories.

A humanist service celebrated your life, filled with loving memories and stories of holidays, helping others and, of course, of trains. No sombre hymns, it was John Denver who saw you out, in your coffin painted all over with steam trains; a perfect ending to a fulfilled life, well lived. Just as you would have wanted.
You will be missed.
Farewell, then, Uncle Ray, farewell.
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31 Dec 2016

How we can use the power of thought to recover from the body blows of 2016

2016 may not have actually seen more celebrity deaths but the point is, it felt like it. Those who died were largely beloved figures. By New Year's Eve, I was wondering whose turn it was today, December had slapped us around so much.
It's as if some malevolent force had picked off the people most likely to invoke public grief so a vast swathe of human emotional vibrations would resonate negatively across the world. And as well as the deaths, there was Brexit and then Trump, two of the most unexpected of events that if, two years ago you said would happen, no one would believe you.

The outrage felt by the respective losing sides was, and continues to be, so palpable that they almost have a physical form of their own. If the reverse results had come about, there would not have been such an outpouring of shock and indignation. Again, a wave of negative vibrations all around us.
If you think vibrations caused by human emotion isn't a 'thing', just remind yourself of the last time you walked into a room and 'felt' an atmosphere, be it exuberant, somber or hostile. The saying 'cut the air with a knife' isn't literal, but it's still an expression we all understand at a visceral level.

There were moments of joy, mainly sporting, such as Andy Murray's Wimbledon win (yay!) and his Olympic gold (double yay!) but even the Olympics were marred by Russian cheating and that's the impression that overshadows the memory of athletic glory.

Can we change things by feeling differently about them?

So how can we change things? There is a saying in the so-called New Age community that 'thoughts become things'. In fact, far from being airy-fairy nonsense, is absolutely accurate, in my opinion. To become a human-led event or a thing, first it must have been a thought in someone's head. That thought is then acted on whether positive or negative. This is the beginning of everything that we create. Then, if the thought takes hold in more people, the effect is amplified. Hence that 'atmosphere'.
The 'thoughts become things' mantra is both more complex and more simple than this explanation. It is that if we visualise a truly-held, resistance-free desire, it will come about. I'm no expert in either explaining or achieving this, but I would recommend the late Wayne Dyer, Abraham Hicks (the inspiration for and source of The Secret) and myriad others who can express it far better than I. You may want to start here, if you are interested and open to learning more.

So how can we change this feeling when all around us is pretty grim? It's a tough one, isn't it? Of course we're going to react to something happening, we're only human after all. Even an ancient tree's branches bend in a fierce wind. How can we withstand such extreme external forces and still be positive?
The answer is not an easy one, but it's something I have been learning as a parent of children with SEND, as a person with chronic pain, as someone who grew up feeling constantly misunderstood only to be recently diagnosed with autism. I learned that if you are determined enough, you can withstand any storm and come out more resilient and even smiling. I have learned that being angry at others, whoever they are, does not help if it uses all your energy and consumes you. The object of your ire is not hurt your anger; it is you who is further damaged by the real, physical and mental effects of stress. If you can, channel your anger into positive action to change what you don't like, but (dear Brexiteers) it's a good idea to actually have a some thoughts beyond just 'change' first!

The power of emotions

We all need to be more consciously and constantly self-aware of how our feelings affect us and those around us. Emotions are a powerful force and the growing understanding of this is at the root of why the pursuit of Mindfulness has become popular. It is the desire to no longer be a ship cast adrift and rudderless on the high seas, but to have self-management skills to get that vessel- yourself - under your own control and steer it to safety. Without adequate self-control and the ability to be in touch with ourselves, we cannot easily help anyone else, not least our children.

Emotions are also infectious. Who doesn't smile when they see a child laughing and full of joy? We are also able to feel the agony of a friend or loved one when they are in pain, as if the feeling is our own.
I'm not suggesting we smile the next time a celebrity- or anyone else- dies or that we should not react to personal tragedy or loss. Neither am I suggesting that we should be automatons and not feel anything at all. It is our ability to feel complex emotions that sets up apart from the rest of Earth's inhabitants (as far as we know)
But we should remember that we are not the branches of a tree, we are the trunk and we can stand firm and spread our roots deep so that not even the strongest hurricane can tear us down. We are the captain of our ship and we can set our own course regardless of where the masses are heading.
Because who benefits from us being paralysed by fear and sadness or transfixed by major events whether a disaster, terrorist attack or something as trivial as a TV show? Not us, that's for sure but those who have a vested interest in the status quo are quite happy when we are confused or distracted.

Plow your own furrow

I have been involved in the media industry all my adult life, so it may seem counter-intuitive of me to advise you not to let the media decide how you should feel about something. Actually, as someone who knows how the news is made, it should make perfect sense. If you're in any doubt, read this.
If you're not sure of the facts of a story, try Full Fact or, in the US, Snopes or the Center for Public Integrity.  You could trust your gut, but that depends on how partisan your gut is...

Do something to make a positive difference. You can't stop any war by yourself, but you can welcome a refugee into your community or make a donation in time or money to a disaster relief or child poverty or exploitation charity. You can't bring George Michael back, but you can celebrate his life and learn from the kindnesses we have now discovered he showed to others and do something similar ourselves, however small. We are not rudderless ships in a storm.

Every day, ask how our actions and emotions are affecting those around us. Ask if you've made a positive difference today, even a smile or a kind word. Be on the look out for opportunities until it becomes second nature. Even in the depths of despair we can do this. The world needs all of us to make a positive difference, however small you may think it is; it still counts. Most of all, we feel better in ourselves for having done it. Our thoughts brighten, our backs straighten despite our burden and we breathe a little easier.

As we move into 2017, battered from the year gone by, we must ask ourselves what kind of a world we want to live in. Then we can use those powerful, positive thoughts and vibrations of ours that we have created by thinking good thoughts and doing small, kind things, to foster a more collaborative community that cares about each other as if we were all one family. Because, in the end, if we are all to prosper, this is exactly how we must consider ourselves - as part of each other.

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23 Dec 2016

Building a website for your group or charity on a shoestring budget

I recently took part in a webinar aimed at helping rare disease patients who want to start a website for their patient group or small charity.
Almost half of the world’s population is online, with the number of users growing daily. People are increasingly turning to the Internet to answer all of their questions – and this includes health.
A 2013 study from the Pew Research Centre found that 72% of internet users have looked online for health information in the past year. For rare disease patients, dispersed around the world, the Internet can be their first port of call following a diagnosis.
It is crucial that patient groups are able to reach out to these patients, to provide them with accurate information and engage them in the group’s community. A simple way to do this is through a website.
It can be a confusing process when you're trying to choose where to host your site, how to structure it, construct it and what to put on it. Added to this, you're certain to want something that costs next to nothing to create and maintain.
Building a website for your group or charity on a shoestring budget

Tips can be used by anyone wanting to start a website

This webinar, held by Findacure Foundation, starts with a talk from Rob Stobo, a web copywriter about thinking about your content.
My presentation starts at 33" and the webinar concludes with questions from the participants. I talk about the options for starting a website with little knowledge, how much it may cost and tips for designing, building and publicising it.
Although it's aimed at patient groups, it's important to note that the tips are usable by anyone who wants to start their own low cost website. Do please share with anyone who might be interested.

To see my presentation by itself (no commentary), click here
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15 Nov 2016

Ehlers Danlos syndrome. Sometimes hard to see, always hard to live with

Son2 and I were both diagnosed with Ehlers Danlos syndrome by leading world expert in the condition, Professor Rodney Grahame. As well as being about as knowledgeable about the condition as it is possible to be, he's also kind, genial and still passionate about his field, despite being past the age at which many would be thinking of retirement.

Prof. Grahame, however, is still at the top of his field and has just published a new medical paper on EDS Hypermobility type, along with two other authors, Dr Yael Gazit, Dr Giris Jacob. It's entitled Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder.

It's an important paper for EDS, I believe as it's just the kind of easy to understand information that can be presented to medical professionals to help them understand how the condition can affect so many different parts of the body at the same time. It's not "catastrophising" (don't you just hate that word?), it's not imagined, it's not a coincidence. If it contains collagen, as most things in the body do, it is likely to be affected to a collagen disorder. I'm not quite sure why this is a surprise to anyone.

Ehlers Danlos syndrome. Sometimes hard to see, always hard to love with

It's also the CQC's Invisible Conditions Week, so I thought it would be a perfect subject for a post here, my irregular counterpart to Special Needs Jungle which is for children and young people with disabilities.

Many types of Ehlers Danlos are extremely rare and can be fatal. EDS-HT, however is much less so, but because it is a connective tissue disorder, found all over the body, it is pervasive and can be extremely disabling, as I have found. While EDS can be invisible if you're able to walk about easily, many need to use crutches, splints or wheelchairs or perhaps rely on naso-gastric tubes for nutrition. Almost everyone with EDS is affected by fatigue.

Living with EDS is, at best, a bit crap. Work is left undone because I have to sleep. Days are lost to pain, bone-dragging, walking through-treacle fatigue or recovery from activity. Pain meds must never be forgotten or you get hit twice as hard. Attending events has to be carefully planned so I can rest before and after. It's a pain, living with chronic pain. 

The article describes EDS HT as a "complex hereditary disorder which is multi-systemic, probably due to the prevalence of connective tissue in all body systems. Its gene defect has yet to be found and might be of multi-genetic nature".  This basically means it is likely to be caused by more than one gene and so any cure is likely to be a loooong way off. Increasingly, suspicion is growing that it is also connected to autism because of the increasing number of people diagnosed with both conditions, including my boys and me.

Even more perplexing, the level of hypermobility a person has can have no correlation to the amount of pain they experience. As a child, I was bendy, but not double-jointed. I did, however, suffer unexplained, severe bouts of pain in different parts of my body that would come and go. Back pain has been an almost constant companion, even at one point, a slipped-disc that sparked back spasms, something I would say was actually worse than labour pain. I actually used to think living like this was normal because to me, it was. I have also always had regular dizzy spells, neck pain, jaw pain, intestinal pain and digestive difficulties, palpitations, was extremely short-sighted before I had Lasik, have life-long depression and anxiety, dysmenorrhea so severe it made me throw up and excessive adhesions as a result of abdominal surgeries. These are all manifestations of EDS that the paper cites as common to the condition. I never once wondered if they were connected. I just thought I was a general weakling. 

It's hard to believe it took until I was 45 to be diagnosed. Well, not really that surprising considering how many people out there are also late being diagnosed after similar experiences to mine. I had a successful career despite all those ailments. I just "got on with it"; what else was I supposed to do? My ambition was far superior to anything else at the time, anyway. 

I got married, had kids, though childbirth was extremely difficult, ending in caesarians. It wasn't until, after a particularly stressful, exhausting time when I'd gone back to working, pushing myself hard, that the regular aches exploded into an all-over conflagration of agony in 2012, that has never gone away.

invisible conditions

To look at me today, sitting in a conference or on a train, you wouldn't guess there was anything amiss. I actually look quite well. It's only when I stand and then perhaps sit down again when my blood drops to my feet and my heart starts to race, or you see the stick I use (for stopping, not for walking), that you notice anything different. 

The stick is a handy prop, really. It turns the invisible into the visible. The stick makes my life easier not just because it helps me stay upright when there is no person to hold onto, but because it signals to others that I have a disability. And it works, as I am usually offered seats, helped with heavy bags, offered directions to the lift instead of stairs and so on. The stick is like a magic wand that spurs kindness and humanity in strangers. The wheelchair, when I need it, even more so, but that also gives me a ring-side seat on how disability-unfriendly the built environment is. Something to write about another day.

Treatment for EDS is hard to come by. The paper recommends: 
...multidisciplinary co-operation and consulting with a cardiologist with echocardiogram monitoring every 2–5 years, orthopaedic surgeon with a follow-up once a year, oral and maxillofacial surgeon for temporomandibular joint involvement, gastroenterologist when gastrointestinal manifestations are present, ophthalmologist to rule out other connective tissue diseases and when ocular manifestations are present, urologist and urogynecologist when urologic manifestations are suspected, neurologist and neurosurgeon when prolonged headache is present to rule out Chiari 1, and psychiatry when anxiety and/or depression are suspected. Allergologic consultation may also be needed when there are multiple drug reactions and/or food allergies. An autonomic nervous system specialist should be consulted when signs and symptoms of POTS or other autonomic nervous system manifestations are present. Management includes physiotherapy and hydrotherapy aimed at symmetric and generalized muscle strengthening and proprioception acuity improvement, including deep connective tissue manipulations after each session, occupational therapy when wrists and fingers are involved, and cognitive behavioral therapy for proper adjustment to the chronic nature of the condition. Nutrition has an important role in treating EDS-HT, and nutritional deficiencies should be sought out and treated.

Wowzer, well that would be nice, wouldn't it? But the point of highlighting this paper is that people can print it out and take it along to their doctor. It's great that the Prof recommends this as a treatment standard, but it's another story when you're trying to persuade your local doctors to give it to you.

It also recommends hydrotherapy, which is one of the NHS's best kept secrets and when you find out about it, it only comes in blocks of six, which is when it's only just starting to show benefit for someone with a long-term condition. This really needs to be rethought, or at least the facilities could be rented out after hours, perhaps. 

This new papers' authors make an important recommendation in conclusion that until a gene or genes for EDS-HT have been identified, doctors must think about the possibility of the condition in every chronic pain patient and look for joint hypermobility, as well as the other multi-systemic manifestations the paper mentions. Do you think they will? Sadly, I doubt it. It's much easier  - and quicker - to send people (mainly women) having been treated for each symptom, as indeed I was for much of my life, than to consider looking at the patient as a whole. 

This is why charities such as The Ehlers Danlos Society exist, so that information about the different types of EDS can be publicised, patients empowered by knowing the symptoms and where to go for help and how to ensure they get it. And, most importantly, so that doctors can be educated in how to recognise, diagnose and treat it and be reminded that zebras can sometimes also be horses.  
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28 Aug 2016

Study indicates deconditioning doesn't cause PoTS, but has a cardiac trigger

Study indicates deconditioning doesn't cause PoTS, but has a cardiac trigger

A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (PoTS) has recently popped up.

PoTS is often -erroneously- put down to the result of deconditioning - i.e, not doing enough exercise.
It's one of the things that people with the condition (including me) find most upsetting, the thought - sometimes spoken, more often just reflected in someone's face, that it's really all our own fault.

While PoTS can be as the result of many things, for example, a chronic pain condition such as Ehlers Danlos syndrome, its effects can be utterly disabling. It ends up as a vicious circle of not being able to exercise or even stand up through the symptoms of dizziness, fainting, chest pain or nausea (among others) and that makes it even harder to get up because you're weaker through lack of moving about. This is called 'exercise intolerance'.

This explanation may be given to patients in a dismissive way - sort of, 'You've let yourself down by being lazy so just try harder, get up and you'll get better'. But how do you do that when you can't stand up in the first place? And what was the trigger for those people whose PoTS came on suddenly, at the same time as the other illness (as in my case) or just by itself out of the blue? Deconditioning does not explain this.

However two doctors have written to the journal, Pulmonary Circulation, as a follow up to another study that sparked their attention. Doctors, Svetlana Blitshteyn, MD of Buffalo's Dysautonomia clinic and David Fries, MD of the Sands-Constellation Heart Institute in Rochester, both in New York State, analysed this study on low ventricular filling pressures as a cause of exercise intolerance and dyspnea. They believe it sheds some light on the causes of PoTS saying:

Previously, a low stroke volume and decreased cardiac mass in patients with POTS have been attributed hypothetically to deconditioning. This study provides the first objective evidence that low ventricular filling pressures in patients with POTS are contrary to what would be expected in deconditioned patients—high filling pressures.

The doctors commented that the study (although small) could be applicable to the majority of PoTs patients in that, "exercise intolerance in POTS is not caused by a lack of maximum effort from the patient but that low ventricular pressures occur despite the maximum effort."

If they're lucky, patients with an autonomic dysfunction such as PoTS have non-invasive (i.e, not surgical) tilt-table tests or other cardiac stress tests, ECGs and perhaps blood tests to diagnose them. Unless you can pay privately, in the UK these tests have incredibly long waiting lists on the NHS, during which time patients are becoming more ill. Many such as myself often need to use a wheelchair to even leave the house.

My Automonic Testing

My own story illustrates how difficult life with this condition can be and I do, in fact, consider myself lucky that I am not a young woman, just setting out on life. It also shows why compassion and understanding is far more required than telling someone they just need to pull their finger out and get on the exercise bike. I'm not saying that doing nothing is the right thing either, but a huge amount of support is needed, especially if you are young with little experience of life.

For me, the wait was 18 months before I got an initial appointment. Then, a further three months before I got the tilt-table tests. Then, incredibly, TEN months before I got the results of the tests. All during this time, life was very difficult. I could only walk short distances without having to stop and sit down or, if there was nowhere to sit, to bend down to get my head as low as possible.

Of course family life continued around me, with me feeling like I was less relevant, less able to participate and altogether more useless by the day. It was probably my own fault for not trying hard enough, of course. I tried dying, but I didn't even manage to try hard enough at that. What a slacker.

When I went back, I was given a trial of Ivabradine, which had a very positive effect. My GP however, didn't want to dispense it as it was off-label and the specialist letter hadn't yet arrived (and didn't for some time). After I become quite upset, my GP relented and made out the prescription. 

Although I was told by the Autonomic clinic I would get a follow up appointment in three months, I didn't get any letters until I received one discharging me, as I had apparently failed to attend! Like I would fail to attend after all that waiting! The letter had simply not arrived.

Despite explaining this to them and speaking to my GP and to my EDS specialist, they have not yet sent me another appointment and we are now more than a year after the results appointment. In the meantime, I have taken it on myself to double the dose as it appears no one else gives a stuff whether it's working or not, so I'll just do it my way.

The Ivabradine certainly isn't perfect - not by a long shot. But it does give me more ability to move around and I have worked to increase my strength. Of course there is always the knock-on of fatigue but I'm doing as much as I can, paying for one-to-one Pilates to try to recover some strength. It's not easy, especially as I am no 20 or even 30-something, (barely even a 40-something now) and it often feels like you get through one door only to have it hit you in the back and knock you flat.

Deconditioning a result, not a cause

In their letter about the study, the doctors reiterated how people's responses to patients with this condition can often make it worse.

"Patients often feel frustrated and blamed for their illness and a lack of improvement or recovery when they are labeled as deconditioned or told that they are not putting their maximum effort, regardless of whether they are exercising routinely as part of their therapeutic regimen or have not been sick long enough to become deconditioned.
"Deconditioning can occur secondary to prolonged bed rest and chronic inactivity in patients with POTS, but appears to be not a primary underlying mechanism. Larger studies comparing the invasive cardiopulmonary exercise tests in a cohort of POTS patients vs. sedentary healthy individuals are needed to further delineate the pathophysiology and possible therapy for POTS, both in terms of tolerated exercise programs and pharmacotherapy."

This last bit means they need to do more research so they can shore up the findings and come up with improved treatment of both medication and suitable exercise programs.

Getting upright again can be done, but it is a slow progression and patients need lots of support and the funding to pay for it. For example, hydrotherapy is great, but in the NHS it usually comes in blocks as it's designed for injuries, not chronic conditions and is in short supply. I had it and it was indeed helpful but I needed someone to take me and bring me back and a day to recover as it was so exhausting. 

In my own case, and that of many others, this study's findings seem to be self-evident. In EDS, the veins and arteries don't snap shut quickly enough in standing, so blood starts to pool in the lower extremities and the heart must work harder with less blood to keep the body going. Ergo, low blood volume.

A new role

I'm delighted to say that I have taken on a new, volunteer role as UK and Europe Advisor to the new Ehlers Danlos Society, which has been formed from the US-based EDNF. Lara Bloom, formerly CEO of Ehlers Danlos UK, is jointly leading the new charity and the aim is to expand globally providing trusted information of use to patients wherever they live. I'm happy to be involved.
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11 Jun 2016

The Hydrafacial: an easy way to beautiful skin

When you have a chronic illness, everyday life can seem like walking head-on into a hurricane. Putting one foot in front of the other, both physically and metaphorically, can seem like you are up against an unseen but powerful opposing force that, with one unwise step, will whip you off your feet into a maelstrom with an unknown ending. It's an uncertain and exhausting existence.

That's why having nice things happen can mean far more than you might ordinarily expect. It lifts your spirits and reminds you that the sun's warmth can still reach you. You remember that you are still a woman first, not just a patient or a carer or a parent.

That's especially true when it's something as delicious as a facial. And not just any facial, but the treatment that's sought after by A-list celebrities: The Hydrafacial.

When Miss Sherina Balaratnam of the state-of-the-art S-Thetics clinic in Beaconsfield, asked me if I'd like to try out the Hydrafacial for myself, it was just the thing to help prepare me for a challenging three-day conference that was coming up. In fact, just being in the clinic, with its all-white decor and hi-tec clinical equipment, makes you feel like you're about to experience something really special as Sherina and her team make you feel so welcome and at ease.

I've been lucky enough to test several other treatments at S-Thetics, the Fire and Ice treatment, Juvéderm fillers and my absolute favourite, the EndyMed 3DEEP, none of which I would have been able to do without Sherina's generosity in exchange for an honest review. And from the description of the Hydrafacial as a six-step, personalised, pore-deep treatment, I knew my tired-feeling skin was in for a treat.

Sherina even sent me on my way with a divine bottle of Copper Mist firming mist, to keep my skin happy and hydrated.

Sherina's Copper Firming Mist gift from iS Clinic

The Hydrafacial

The Hydrafacial can be tailored to match whatever needs your skin may have, and this can be analysed first with S-Thetics' Visia which analyses the state of your skin deep into the dermis. I already knew from a previous Visia that I have sun damage from being fair-skinned and the signs of ageing you would expect. Sherina selected the Hydrafacial Skin Health for Life treatment which, which detoxes, exfoliates, brightens, extracts impurities and then treats the skin with pure botanicals to rejuvenate, plump and firm.
You can buy the same serums that the Hydrafacial uses separately

The Hydrafacial uses a multi-functional wand, attached to a machine that pumps through the right serum for each stage of treatment. The wand has different heads according to the job it's doing, from exfoliating dead skin cells, to extracting deep down dirt from the pores to delivering the soothing and firming serums, hyaluronic acid and peptides to leave you looking your best.

The Hydrafacial kind of reminds me of when I first got a Dyson vacuum cleaner. I thought my carpet was clean until I used the Dyson. It sucked out deep down fine silt that other cleaners hadn't touched. The Hydrafacial is a similar premise: you might think your skin is clean, but wait until you see what clean really looks like. It means your face looks fresh, more youthful (if that's what you need) and with any skin troubles greatly improved.

Rather than just tell you about the treatment, I made a short video with everything you need to know. And I just know you'll want to try it out yourself.

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7 May 2016

The enigma of Ehlers Danlos syndrome and why it's vital to make the #InvisibleVisible

Ah, it's Ehlers Danlos Awareness Month again, hurrah, zebras unite and shake your stripes! Gently, though, we don't want any awareness-raising injuries.

EDS is a very enigmatic condition. It's rare, yet it might not be particularly rare. It's often in the papers with one case or another, yet no one has heard of it. It's a condition that makes collagen very stretchy, so it affects pretty much all the body and yet medical professionals continually fail to consider it as a possible diagnosis or to make an appropriate referral.

Let's look at these conundrums in more detail, [and make sure you read the end for a chance to donate a £1 to EDS UK and buy buying something stripy and cool for yourself!]

The enigma of Ehlers Danlos syndrome and why it's vital to make the #InvisibleVisible

Is it rare, or just rarely diagnosed?

Certainly most types of EDS are rare, several extremely so, but what about Type Three, Hypermobility type?

Hypermobility in itself is not rare. Most dancers and gymnasts will be hypermobile- just ask Isobel Knight, a dancer with EDS, turned author and Bowen Practitioner. And, when you are hypermobile, you will be more prone to joint injuries.
But EDS III or Joint Hypermobility Syndrome isn't just about being a bit bendy or doing a few stomach-churning tricks with your double-jointedness. In fact, many people with EDS III aren't even especially bendy, particularly if they are older.

The thing about EDS is that it's a spectrum condition, which means that patients will all be different. Most will have one or more of a range of co-morbid conditions that stem from having dodgy collagen, any or all of which can be disabling just by themselves. These can include orthostatic tachycardia (PoTS), gastric issues like reflux or more severely, gastroparesis. Some will dislocate or part dislocate (subluxate) their joints regularly or have such instability that they need bracing or life-saving surgery. Depression and anxiety are very common and several physicians and practitioners familiar with EDS have noted to me the growing numbers of patients with both EDS and various degrees of Autism Spectrum Condition.

What EDS patients do have in common is chronic, intractable pain that can bear no resemblance to their level of flexibility. In fact, it is not uncommon for someone with EDS to be very stiff as their body attempts to stabilise itself and because chronic pain can lead to lack of activity.

It's often in the papers

Why is it that the media seem to love stories about people with EDS? See them here, in a wheelchair talking about "popping out" all over the place or there looking brave, with a naso-gastric tube. Why, even Coronation Street has an actress with EDS, Cherylee Houston. Sadly, the mainstream media often get a bit confused, cause consternation and then have to apologise. This does put EDS in the spotlight though, giving advocates a chance to set the record straight.

Added to this, if you move in certain social media circles it can almost seem that every single EDSer in the world under 30 has a Tumblr or other blog, a YouTube channel, a Facebook page or an Instagram, all of which post selfies, memes and videos about living with the condition.

I think this is as much a sign of the times as an indication that the condition is more common than thought. Why? Because EDS seems to affect mainly women. And teenage girls and young women like connecting pro-actively through social media, for what else is there to do when you're stuck at home ill than take to the internet and do your bit to raise awareness? With the number of EDSers who are on social media, it's amazing that there is anyone in cyberspace who hasn't heard of it. It's certainly a shame that more doctors don't seem to be active social media users - then it would be job done, no need for any more awareness days for EDS!

Pity us "more mature" ladies who suffered in cyber-silence and diagnostic ignorance because social media wasn't invented for most of our lives. Most of this age group will probably have been diagnosed following their child's diagnosis, have been told they have Fibromyalgia or just written off as being a "hypochondriac".

For our children, however, these dismissive reasons do not wash. We have sought answers for our sons and daughters so they receive better care and a more timely diagnosis. Hopefully.

Because of this I think it's painting a skewed picture of the prevalence of the condition, but the question remains: Despite all this media coverage, why isn't the medical profession moving more quickly to a greater understanding of the condition?

So why aren't medical professionals finding a cure?

Because of its multi-systemic nature, it's easy to mistake EDS for so many other conditions. Speaking for myself, I have experienced most of the stated symptoms of EDS III during my lifetime, just not all at once. So when you show up at the doctor's surgery with a slipped disc or depression or dizzy spells or intestinal difficulties etc, that is what you are treated for and why would anyone look any further?

It's only when they come together all at once that there is any reason to hypothesise. If you just get a lot of one particular symptom, you're quite possibly going to be misdiagnosed or just be filed in the 'medical mystery' drawer.

There is no single drug or operation that will cure Ehlers Danlos syndrome, nor is there likely to be any time soon. The main reason for this is, as I said above, it's a spectrum condition so no one solution will do.

It's also genetic, so the 'cure' is most probably in gene therapy or CRISPR - gene editing. These are controversial, highly regulated and expensive areas, so a rare condition that doesn't instantly kill the patient isn't going to be at the top of the list.

The third reason is a mixture of the above. Because of the rare and genetic nature of the EDS rainbow, no one drug will make it better so just the symptoms are tackled. Pharmaceutically speaking, this involves drugs for pain, heart regulation and gastric distress, among others. Most of these are cheaper off-patent drugs such as opiates, beta-blockers and so on. There are some newer drugs for heart regulation such as Ivabradine and Midodrine, but they were not developed for this purpose, they only suit certain kinds of PoTS and are mainly prescribed by a specialist - and you have to find one first. So, for these reasons, big pharma have little interest in driving EDS-specific drug research forward as there is little in it for them financially. There is more scope, however for drug repurposing.

Keep on raising awareness

So all these reasons above are why it is so necessary to continue to raise awareness of Ehlers Danlos and related conditions and why it is vitally important to educate medical professionals, education providers and the general public about the condition.

In particular, it is important to educate social workers that an often ill or bruised child is not always an abused child; that before they swoop in and fracture a family by removing children from their parents, they should seek professional, expert guidance as to whether the child may have an undiagnosed condition such as EDS (or other similar conditions).

So why not help illuminate, educate and make the invisible visible? Join or start a conversation on the international EDS Forum at RareConnect (anytime!) I'm there, my username is Tanushka
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21 Mar 2016

Disabling effects of PoTS shown in largest ever survey and how educating health professionals can help


Postural orthostatic Tachycardia syndrome or PoTS, is a complete bastard of a condition. It doesn't kill, thankfully, but it can quite often make you feel like you have no life in you.
It can be a condition on its own or a comorbidity of another condition, such as mine, Ehlers Danlos syndrome. 
In its extreme, life-altering state, it's pretty rare and extremely misunderstood. The charity PoTS UK, has teamed up with researchers and conducted the biggest ever survey of people - mainly women - living with the condition. The research, A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK is published in the British Journal of Cardiology.

It covered causes, symptoms and treatment options. You can find the whole survey here. 
Below are a few excerpts: 

Postural tachycardia syndrome (PoTS) is a recently recognised condition that usually affects younger women, who develop symptoms of orthostatic intolerance and a persistent tachycardia on standing upright. Healthcare professionals, patients and the national patient support group (PoTS UK) together created a survey, and the responses of 779 UK PoTS patients were analysed. The most common symptoms of PoTS at presentation were the triad of fatigue, lightheadedness and palpitations. Mobility, ability to work or attend education, and quality of life were significantly restricted. Cardiologists, followed by patients, were most likely to be the first to suggest the diagnosis of PoTS. Patients waited a mean of almost four years from presentation to obtain their diagnosis and, meantime, psychiatric mislabeling was common. Advice given to patients regarding lifestyle changes was variable, and those referred to specialist practitioners for help, found practitioners had limited knowledge about management of PoTS. Increased education of healthcare professionals and improved services for patients are recommended. 

And this is key. I find a little knowledge is a dangerous thing. If a health professional has heard of PoTS, their knowledge is usually incomplete and often based on faulty assumptions, such as, "Well your blood pressure didn't change quickly enough when you stood up so it can't be PoTs," or, "We did a 24 hour ECG and you were fine," despite numerous spikes in heartbeat of more than 30bpm when just standing or walking slowly up stairs (or half a staircase).

Treatments vary depending on if your symptoms are blood pressure or cardiac arrhythmia driven. For me, I have little blood pressure response, but my EDS means my blood vessels in my lower extremities are too stretchy to constrict quickly enough when I stand. This means blood begins to pool in my extremities, my brain tells my heart it isn't getting enough oxygenated blood and so the heart races to restore the flow. I feel dizzy, light-headed, pressure in my chest from a racing heart and nausea. It can continue for a while after I sit or sometimes have to lie down after the after-effects can linger for hours. On occasion, that's not enough and I have to put my legs in the air as well - tricky if you're out! If no chair is around, you'll see me bending completely over to try to even things out. So much for 'invisible illness'. 

The report says of PoTS:  

Diagnosis is usually made by active stand test or tilt-table testing. Few treatments for PoTS have been tested in randomised-controlled trials. Patients are initially managed with increased fluid and salt intake to increase blood volume, avoidance of symptom triggers (heat, prolonged standing, alcohol, drugs that induce tachycardia or hypotension), small frequent meals (low in refined carbohydrates), graded exercise (initially in a horizontal position) and compression garments to reduce venous pooling. Drug treatment can be aimed at reducing tachycardia (low-dose beta blockers, ivabradine, pyridostigmine), vasoconstriction (midodrine), boosting blood volume (fludrocortisone, desmopressin) or for their sympatholytic effects in hyperadrenergic PoTS (clonidine, methyl dopa).

showing heart rate of 151
My heart rate from 69 sitting to 151bpm 15 seconds later walking slowly half way up the stairs

Interestingly, 92% of the survey respondents were female and half had an additional diagnosis, like myself, of EDS. Many reported fatigue as one of the most debilitating symptoms.

Physicians call conditions like this 'benign' - i.e, you don't die from it. But believe me it feels anything but benign; it can be utterly life-altering and not in a good way.

As for diagnosis, many were wrongly told their condition was psychological or psychiatric- "It's all in you head, dear girl." Just writing that makes me extremely cross. And the least aware and the most important to educate? Your first port of call, the family GP. The report says: 

"In only 7% of cases did the GP suggest PoTS as a diagnosis. This may be due to lack of awareness in primary care about PoTS or the non-specific and multiple symptoms that are associated with PoTS. However, it is possible to undertake a 10-minute stand test in a consulting room, and perhaps this should be considered in patients with relevant medically unexplained symptoms or chronic fatigue, especially if there is a postural link to symptoms."

The impact of PoTS is considerable, with 23% becoming wheelchair users (including me, part-time for long distances) with 37% are unable to work. I am no longer able to be 'employed' but my time is used as a freelance writer, voluntarily with Special Needs Jungle and as a Trustee of Genetic Alliance UK. I am a 'real' Patient Advocate - I live it, and I work to help others. In other words, I don't do it for a living and I can't walk away into a better job when I fancy it. 

Tania in wheelchair with dog
One of my first times out in a wheelchair in 2013

The most important recommendations in the survey report are education of health professionals and the need to improve accessible and relevant rehabilitation services. It's no good saying go away and do some gentle exercise when often even getting out of bed is impossible. 

I pay for a one-to-one Pilates instructor, who completely understands the conditions I have because she is similarly affected. Her career choice has kept her mobile (most of the time!). I'm aiming for the same thing, though it is often two steps forward and one step back; sometimes two back. I have been awarded a Patient Fellowship to attend the three-day European Conference on Rare Diseases in Edinburgh in May - that's a big goal to increase my fitness for!

But even now, three years on from the onset of chronic illness and pain, depression can flip on easily, from someone's unkind or careless word from someone - another battle to guard against. As a mum of older teens with both Asperger syndrome and milder EDS, I can't just think about my own needs. If it wasn't for my husband, I wouldn't be able to manage. 

Congratulations to Leslie Kavi of PoTS UK, named as a co-author of the report. Great work and hopefully this will be printed out by as many medical practitioners as patients. If you're a patient or carer, print the report out and pass it to your GP, physiotherapist, workplace if you have one or child's school or college. They're most probably too busy to find it, so help them out with their understanding. 

The survey has many more detailed figures and much more information. Once again, find the report here: http://bjcardio.co.uk/2016/03/a-profile-of-patients-with-postural-tachycardia-syndrome-and-their-experience-of-healthcare-in-the-uk/
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22 Dec 2015

Can you help #careforLaura crowdfund fund life-saving surgery for Laura's Ehlers Danlos syndrome?

As you may know, since 2013 have been disabled by the rare disease (or rarely diagnosed disease), Ehlers Danlos syndrome. I've been at rock bottom and have, with the support of my husband, managed to drag myself to a somewhat precarious place where I can work a few hours a day.

Days out or meetings are always a knock back but I build the down-time in. I've know that I'm lucky to have got to my mid-forties before this genetic condition hit me with its full force.

Recently, I was put in touch with another woman who lives close to me with the same condition. Laura Sylvester and I met for a coffee in Farnham, where she told me her story. 
Laura is just 23 years old, beautiful, smart and determined. A lover of sports, Laura was studying for a Masters degree at Imperial College, London, when EDS took hold. She became so unwell she had to pause her studies and return home to be cared for by her parents.

Laura's condition has continued to deteriorate and her vertebrae are now so unstable, it's put her life at risk. She needs vital neurosurgery that is only possible from a particular surgeon. He happens to be in the US and so this is going to cost a lot of money. A lot of money that Laura and her family don't have. 

However, I mentioned that she is smart and determined, and so Laura has launched a crowdfunding campaign #careforLaura, to ask for people to help her reach her funding goal so she can have the surgery early next year. This will mean she will be able to resume her studies and, although she will still have EDS, she will have a shot of achieving her goal of becoming a geologist.

Here, Laura tells her own story:

Can you help #careforlaura?On 7th August 2014, I was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) with PoTS (Postural Tachycardia Syndrome). EDS causes the connective tissue throughout my body to be extremely stretchy and easily breakable - there is no cure for it. Over time, my muscles in my neck have become very unstable, which has further led to dislocation/subluxation of my vertebrae, disruption of my spinal cord ligaments, and compression on my cerebellar tonsils and brain stem.

Suddenly my life was flipped upside down and this degenerative muscular condition caused me to deteriorate quickly, forcing me to postpone my Master’s degree at Imperial College, return home, and be cared for by my parents.

Once an extremely sporty, sociable, positive and driven young woman, I have become tremendously vulnerable. I am in extreme pain, I wear a neck brace all day, and I am at constant risk of further damaging my brain stem, that would consequently cause me to stop breathing.

I am in desperate need of specialised EDS neurosurgery which will be done on 13th January 2016 in Washington D.C., USA. There are few experts in the world who can do this. The total of the medical expenses, travel and recovery is very high. I hope and NEED to raise at least £75,000 ($110,000) to fund this.

The surgery will create stability in my neck and stop the compression on the brain stem and cerebellar tonsils, essentially saving my life. This will enable me to carry on living my life as a normal 23-year-old, hopefully mostly pain-free and without the worry of causing further damage, which could otherwise prove fatal. 

Even though the surgery will offer me the stability that I need, unfortunately it comes at a cost of losing complete movement of my head and neck. Nevertheless, I am determined to adapt to this and begin fulfilling my dreams once again and resuming my Master's degree.

Any amount of donations and support for this specialist neurosurgery will be so tremendously appreciated, not only by myself, but also my family and friends. Please do consider contributing to the first major stepping stone that I need to live my life without fear.

22nd December 2015:

Laura is now within £5000 of her target - an INCREDIBLE achievement in just two weeks. Can you help push her over the finish line?

Read their story here

For more information about EDS, visit EDS UK
For new stories about EDS, check out my Tumblr news site A Rare Diagnosis
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2 Dec 2015

How to rejuvenate your skin in two easy steps

You may have seen my previous post about visiting the S-Thetics medical aesthetic clinic in Beaconsfield, Buckinghamshire when I sampled the delights of Allergan Juvéderm fillers. If not, take a look at the video I made demystifying and informing you about the procedure, which really made a difference not only to my 48 year old face but also to my confidence.

endymed image slate

*Scroll to the end to watch the short video

Surgeon, Miss Sherina Balaratnam, who owns the clinic, invited me to return to try out her Signature facial treatment, which consists of a session with a revolutionary non-invasive EndyMed™3DEEP® radiofrequency treatment.  That's followed by a luxurious Fire and Ice facial tratment that is described thus:

"Pioneered in Beverly Hills and coveted by A listers globally, this renowned intensive treatment is clinically formulated with the purest pharmaceutical grade ingredients and designed to offer the ultimate results driven facial treatment.

The Fire & Ice treatment gives the skin a deep cleanse, leaving it with a beautiful glow. Your skin will feel plumper, smoother and more hydrated, leaving you ready to face the day! This treatment is ideal as a one-off skin rejuvenation treat, but for more intensive and long-lasting results, we recommend using once per week over a six week period."

How does the EndyMed™3DEEP® work?

The EndyMed™3DEEP® is a non-invasive radiofrequency treatment, designed to stimulate collagen, combat loss of elasticity, wrinkles and impaired texture that, let's face it, are for most of us, part of life's little expectations when we are lucky enough to have made it thus far. But it doesn't have to be that way.

"Using radio frequency (RF) energy, EndyMed™3DEEP® safely heats the collagen in the skin making it contract, providing an immediate change in skin appearance.  The treatment also triggers a second process of new collagen production, stimulating your body’s natural collagen renewal process leading to skin tightening and a reduction in the appearance of wrinkles."

You see, this is why those celebrities look so amazing for their age. It's not just good genes, it's great maintenance and luckily, it's not so expensive that it's completely out of reach if you are not famous.

Back at the S-Thetics clinic in Beaconsfield, Bucks, Sherina shows me the Endymed machine, which does indeed look very medical. Reassuringly so. The other factor that takes away any concern is the fact that Sherina is a highly experienced medical doctor and surgeon (hence the 'Miss' and not Dr).

Why did I go for it?

I had noticed in recent months, the skin of my lower jaw feeling a little thinner, less taut and more fragile. Almost certainly no one else would have noticed it, but it was just that the 'quality' of it I could feel had changed. So when Sherina offered me the chance to try out the treatment, I didn't hesitate, especially knowing I was in such good hands.

In any case, I'm not interested in pleasing anyone else - my husband loves me as I am - but I'm just not ready to see in the mirror a face that doesn't reflect how I feel inside. Living with a chronic pain condition can make you feel battered and old before your time, so for me, looking the best that I can helps keep my spirits up.

Back at S-Thetics

In the quiet sanctuary of the S-Thetics clinic, I lay on the treatment bed while Sherina began the EndyMed Facial Tightening treatment. The hand-held part of the EndyMed device reminded me a bit of an ultrasound and as Sherina applies it to the area being treated, my lower face, I could feel the heat penetrating through some contact gel into my skin. It wasn't unpleasant and it didn't hurt. The temperature is monitored and when I indicated, as instructed, that it was approaching the limit of comfort, Sherina knew that it had done its job.

The treatment was very quick, painless and you could have gone straight back to work if that's what you wanted to do. Of course I was just testing out one session, but a course of six is recommended for long lasting effects.

On to the Fire and Ice

The second part of the 'Signature treatment' is the Fire and Ice facial treatment. Most of us have had facials, but this one is a multi-step procedure that peels and resurfaces the skin with 18% unbuffered glycolic acid, citric acid, lactic acid, malic acid, vitamin B3, retinol and potent antioxidants, including green tea extracts. That's the 'Fire' part but it didn't hurt in any way. I have very sensitive, allergy-prone skin and I was a bit nervous that I might have a reaction, but everything is based on natural, botanical ingredients and I was perfectly fine.

The Fire part is an intensive clinical treatment designed to reduce fine lines and wrinkles and provide deep cleansing of blocked pores. 

The second 'Ice' stage is another masque application that is cool, soothing and intensively hydrating. It contains hyaluronic acid, often described as 'the fountain of youth',  Japanese green tea extracts, aloe vera gel, liquorice extracts, rosemary extracts and grape seed extracts. This second masque cools the initial resurfacing and is left on for about 5 minutes. 

After a final cleanse, a moisturising serum and a strong sunscreen are applied to the face because the treatment will leave your face susceptible to the sun for a short while afterwards. 

The Verdict

I'm often sceptical of facial treatments because I rarely feel any different afterwards apart from a bit lighter in the wallet area. But the S-Thetics Signature treatment honestly made a big difference to my middle-aged skin.
It immediately felt plumper and firmer and to me, it looked much brighter and less tired. 
But it was the EndyMed radiofrequency treatment that has made the lasting difference. The fragility I was feeling in my neck and lower jaw has disappeared along with any slight loss of elasticity I had noticed. Now it's back to what it was at least a decade ago. 
My neck especially has shown the benefits. The treatment has tightened all the collagen in my skin so that it's all back where it used to be and I am delighted! 

Ideally, I would have the full course of six treatments but even with just one, the effects have already lasted several months. I'm rather late with this review but in this case, it means I have had a chance to see how the treatment has lasted - and it really has nipped that first sign of sagging skin in the bud and I would recommend it to anyone my age or even younger (depending on how your skin is faring). 

It works just as well for older men and women too - possibly it would have even better results - and its benefits are not restricted to the face. It can treat sagging body areas as well including the abdomen, arms, breasts and bottom. It really is an amazing treatment and if I sound as if I'm raving, it's because it really is worthwhile having, to give you a confidence boost. 

It's true that for many mums, this kind of thing is a luxury we can't often afford, but when I work out how much I've saved by giving up alcohol for example, that would easily cover a treatment every so often. 

And of course, it's nearly Christmas, so if you're looking for a no-down-time treatment to give you that skip in your step for the festive season, look no further than S-Thetics Signature EndyMed™3DEEP® and a Fire and Ice facial.

Thank you once again to Miss Sherina Balaratnam of S-Thetics in Beaconsfield for her generosity (and her patience!) I cannot recommend her enough.

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