6 May 2010

When It Comes to Health - It's Not Good To Be Unusual

I haven't posted recently; being online is more difficult these days. On Easter Sunday, I woke up with a grey streak in my left eye's vision. I wondered what it could be. The next day, it was still there. I rang the local out-of-hours serice who advised me to go to A&E as 'you don't mess around with eyes'.
Much, much later that day, after waiting to be seen for three hours, I was told in a matter-of-fact way by the on-duty opthamologist that it looked like a 'degenerative macular condition' and he would make an appointment with the eye clinic.
My long-suffering husband drove me home, the atmosphere in the car sombre and worried. What would this mean? Total eventual loss of vision? Partial sight? An effective treatment programme and recovery? And a Happy Easter to you too..
Several visits to our excellent local eye clinic later and an audience with a top professor of macular diseases in London - ALL on the fantastic NHS and in very quick time, I might add, I had a diagnosis.
I have a condition called Punctate Inner Choroidopathy or PIC, a rare 'white spot' eye condition. It is progressive and incurable and although I have lesions in both eyes, only the vision of one eye is affected. I read somewhere that only around 500 people in the UK are affected by this and they are predominantly younger women who are (or were in my case, thanks to LASIK) short-sighted.
There are no trials for PIC (as far as I know) as there aren't enough people with it to benefit from the cost of developing treatment, so they rely on treatments already developed for Age-related Macular Degeneration such as Avastin or Lucentis. First-time treatments involve high-doses of steroids.
They don't know what causes it (though some think stress or the immune system may be implicated) or why the profile of people who tend to be affected is as it is. Outcomes are different from individual to individual, as is treatment. It won't go away, but it may well be medically manageable. It's nice to be rare but I'd rather be a bit more common in this instance..
Since diagnosis, I have lost a lot of vision in my left eye but can still drive thanks to perfect vision in my right and peripheral sight in my left, giving me no 'blind spots'. It does mean, however, a readjustment of my expectations for the future as I don't know if or when my other eye will be affected.
I am having some treatment, we have yet to see if it will work. The thought of not seeing my children's faces when they are grown up is distressing and the long list of things you can't do with limited vision that I rely on is truly frightening. Adjustment takes time, especially when the outcome is uncertain and uncertainty leads to fear, stress and irritability.
My parents-in-law have been fantastic, caring for the children when needed and ferrying me to hospital appointments because they put pupil dilating drops in so you can't drive; I don't know what I would have done without them.
I thought long and hard about writing this post but in the end, I thought if it helped someone else, it was worth it. If you are similarly affected, there is a helpful Facebook group and there is also a support website The PIC Society. The Facebook group has over one hundred members so there must be more people out there in the world who may be comforted by finding it.