Name: Russell Wheeler
Describe your motivation for getting involved with the LHON Society.
My then 24yr old son lost his sight over a period of a little over one month. We received very little and even conflicting advice via official channels and by far the most helpful and informative source of information was a global Facebook site. This still does a great job, but if we as patients are to improve the services offered to people with LHON (both affected and unaffected) then we need to be more formally organised in order to have our views heard.
What are your hopes for the LHON Society?
LHON hits everyone differently according to their circumstances so it is impossible to be prescriptive about what is needed from a social and support viewpoint, but for sure I would like to see more practical help being made available, and especially support from people who have been through the same (or similar) experience, which carries much more weight.
I would also like to see more information and guidance being made available to healthcare professionals, who have few resources readily available to them when they first encounter this rare condition.
And then finally, but by no means least, I am so pleased and grateful at the leaps that have been made in understanding this condition in recent years but I believe a cure is possible and much needed. I am not clever enough to find this myself, but I will do all that I can to make it easier for others more capable than me to concentrate on this work and bring it to fruition earlier than would otherwise be the case.
I believe that progress will be made mostly through collaboration, sometimes from the most unexpected quarters. I am therefore especially keen to try and encourage this wherever possible, across disease boundaries and national borders – I don’t care where the cure is found, I just want it to happen and sooner rather than later.
It is important to remember that different people have different reactions to LHON so the right advice for one person may be completely wrong for another. However, I always give advice on how best to get hold of idebenone even though my own son has not experienced any benefit from taking it. It nevertheless remains the only available “treatment” for LHON and all evidence is that it is completely safe so my instinct is to take it straight away and then think about it later.
What is your guilty pleasure?
Easily detected from my waistline, I am a little too fond of good food.
What three words best describe you?
Polite ones, you mean? Fat bald and bespectacled come to mind, but if I could add caring, maybe, because I do care what happens to others.