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.

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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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).

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. 

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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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?

Click here to make a contribution, however small, it will help make Laura's Christmas fantastic and give her the chance of a New Year appointment with her surgeon!

Listen to Laura talking about her appeal and her EDS on Eagle Radio 96.4

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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Flipping fantastic, wheely great - gadgets to keep yourself going

So recently, I have found myself rather incapacitated and standing for longer than a few minutes is proving difficult.
It seems that while I was working in the sphere of one particular rare disease, another kind, EDS, that I have unknowingly had all my life, undiagnosed, was about to knock me to the ground and wipe the floor with me.
I was fortunate for a while that my husband had a gap between contracts and took over the washing, driving the kids about and doing the cooking while I spent large parts of the day asleep and generally being useless. I haven't been to the shops since November and am not likely to for the forseeable future. Thank goodness for online groceries and home delivery!
Eventually, my husband started his new job and I am now having to find ways to get about and do things like cook etc.
Being a solution-focused person, I sought out some mobility aids and this, demonstrated using Twitter Vine, is what I found. I thought I'd share them in case you or someone you know might find them useful.
First the seat flip-stick, a helping hand for standing longer.

Secondly, the saddle seat on wheels, height adjustable, so that I can do things at the counter-top and so on. Obviously, getting someone else to do it for you is preferable but not always possible.


The stool on wheels is a particular hit with the kids - now we need another to have races down the hallway...

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Raising awareness of Ehlers Danlos Syndrome - an under diagnosed rare condition

Lara Bloom, who runs the Ehlers Danlos Society charity, is making a documentary about EDS to help raise awareness of what is a rare but also an under-diagnosed condition. 

You can visit the charity's website here

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Rare Disease Day: Discovering the great work of small charities

We've just been to the Rare Disease Day event at gothic looking Royal Holloway University in Surrey. 

The boys were given the day off school and we headed out en famille, including Mr T (no, not that one).

We first took part in a discussion led by the Genes for Jeans/ Genetic Disorders charity about living with rare diseases such as neurofibromatosis and Huntingdon's Disease. There were a number of GCSE students there, including my boys, who were asked to ponder the question of whether they would undergo genetic testing if a positive result meant that they would discover that at the age of around 30, they would succumb to a devastating illness and early death.

Most decided they would rather not know, but that if they did they would try to live their life to the fullest. In fact statistics show that only 10% of those with a high genetic probability of Huntingdon's choose to be tested at age 18.

In the large picture gallery, rare disease charities had exhibition stands set up from Shine charity (Hydrocephalus/Spina Bifida), Tuberous Sclerosis, AKU, Myasthenia Gravis and Ehlers Danlos Syndrome among others and there were hands-on activities for learning about DNA and the genetics behind rare diseases.

We were especially interested in the EDS stand as Youngest is affected by this and I have also just been referred to the same specialist. 

I had a really interesting discussion with the team from the Alkaptonuria Society and the important research work that's being carried out to try to find a cure. The condition can cause severe pain, osteoarthritis and heart disease.

One really surprising discovery was that after almost 20 years, the message that Folic Acid can prevent spina bifida is still not common knowledge among women planning a baby. This is, apparently, because the main campaign was around the time when I was having my babies who are now 15 and 13, but awareness has faded. Another fact is that it is now known that women need to be taking Folic Acid three months BEFORE they become pregnant for prevention - it's too late once the mother to be is already pregnant. The Shine charity is trying to change this lack of knowledge.

The thing about rare diseases is that millions of people have them but there are many, many different conditions and the vast majority suffer from lack of investment in research and medicines.

• 1 in 17 people will be affected by a rare disease at some point in their life. 
• This amounts to approximately 3.5 million people in the UK. 
• 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. There are over 6,000 recognised rare diseases. 

There are a number of people in my life who have various kinds of rare diseases. The youngest, my nephew Dylan, is just 4 years old.

There are also many wonderful people working to help people affected by rare diseases in the form of volunteers, charity workers for specific rare conditions, researchers, scientists and people working for rare disease organisations such as EURORDIS, Rare Disease UK and NORD.

There is much work being done and it's to be hoped that world-wide events like Rare Disease Day will help to raise awareness and bring in investment to help improve or save the lives of those affected by little-known conditions.

If you're looking for support for a rare disease, check out RareConnect, a multi-lingual forum that has more than 30 rare disease communities - maybe your condition is one of them. If not, why not start one?

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Chemo for little Dylan's Nephrotic Syndrome

I wrote a while ago about my nephew, Dylan and his fight against Nephrotic Syndrome, a rare disease that affects his kidneys.

Next week, Dylan, who is four, is starting chemo.

His mum, Sam, will be giving an update about NS, Dylan's treatment and how it affects his education on my Special Needs Jungle site as part of a series of articles in the run up to Rare Disease Day.

In the meanwhile, this is an article in the Flintshire Chronicle about him.

***

A BRAVE little boy battling a rare disease that causes his immune system to attack his kidneys is preparing to have chemotherapy.
 Four-year-old Dylan Davies-Abbott, who was diagnosed with Nephrotic Syndrome a year ago, will undergo the eight-week treatment from February 4 with the aim of limiting the number of attacks he has.

 His mum Sam admitted it was a “difficult decision” to go down the chemotherapy route as there is a small risk of Dylan becoming infertile. But having had several relapses at the end of last year, Dylan has now been classified as “steroid dependent”, which is the medication used to treat his condition. Steroid use can have damaging long-term effects on his bones and growth, and could also result in him becoming vitamin B deficient.

Nephrotic Syndrome, which is most common among boys aged two to six, affects about 10,000 people in the UK. When the immune system attacks the kidneys, it damages them and causes large amounts of protein to go from the blood into the urine.

 When this happens, it can cause Dylan to become swollen and very tired, as well as causing scarring to his kidneys which could one day lead to him requiring a transplant.
Sam, from Holywell, North Wales, said: “The ideal scenario with the chemotherapy is that we would get a long period of remission without medication and to get Dylan off the steroids.
 “When he has a relapse he does respond to the steroids within five or six days. “We’re grateful that it works but it’s not a long term solution.”
 She added: “We don’t know if the chemotherapy will work but it’s a better option as it’s a short-term intervention.
 “It’s been a difficult decision. Potentially it could have big effects on him.
“There is a very small risk of him becoming infertile.
 “I know the risk is small but it’s still a risk. It’s impossible to say if the chemotherapy will work, it’s very much trial and error.”

 Sam had taken Dylan to hospital in January last year with a suspected sickness bug – what she wasn't expecting to hear was that her son actually had a rare illness and that he may need a kidney transplant in the future.
“They don’t know what causes it and we don’t know why it was triggered in Dylan because he had no underlying health problems”, she said. “It came as quite a shock to us.
 “The worst case scenario is that he could at some point need a kidney transplant but that wouldn’t cure him long term because the problem isn’t with his kidneys.
 “We hope he might grow out of it in late adolescence – maybe 15 years or so.”
Since Dylan was diagnosed Sam and her husband Ian have been fundraising for the Nephrotic Syndrome Trust who carry out research into the illness.

 On March 17, Ian will run the Liverpool Half Marathon to raise awareness of his son’s condition. Sam said: “When we found out we didn’t know any one who had heard of it.”
 For more information visit nstrust.co.uk/pages/home.

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