Moorfields, retinitis pigmentosa, medical research and chairs

Posted in Sandi's blog on 29 June 2010 | 0 Comments

I am sitting in the waiting room at Moorfields Eye Hospital awaiting my annual inspection, and waiting is the operative word, as the medical retina clinic where said inspection takes place is awfully busy, but I don't mind as this is also the place that in 100 years time will probably be a ghost town, so I'm happy to give them the custom for now!

Moorfields is a fabulous place for those of us with one of the range of variations that falls under the retinitis pigmentosa (RP) umbrella, because over the past 20 or so years, they have been at the forefront of every stage of getting to a level of understanding about RP and this will ultimately lead to a cure in time.

They began by identifying that the disease was genetic and have since discovered that it is a group of rare diseases, with considerable similarities, but also many differences and that there are hundreds and possibly over a thousand different genes that cause it. They have been working on finding ways of providing treatments, arresting degeneration and managing existing symptoms, and so far no cure, but boy are they ever working hard on it.

And I do sometimes wonder why I am quite happy to endure a four hour wait, to be told that my eyesight is getting worse and doodly squat can be done about it, but if I don't chip up for the ultimate test of patience, then I certainly can't have any expectation for medical science to move forward. I know lots of people who don't bother because they don't want to invest the time for what seems like an unsatisfactory return on investment, and so they never visit these hallowed halls and that makes me quite frustrated as I know that these same folk in their private moments, like anyone with an incurable degenerative disease has every right to do, hope against hope for a cure.

At the end of the day, I know that it will probably not happen in my lifetime, but if I can play my part in helping generations to come, then that is certainly what I will do, so even though I am pretty certain that the chair I am sitting on is the official winner of the most uncomfortable chair in the world award and I am inclined to get down on the floor and start a yoga session to ameliorate the boredom as well as my quite literal pain in the backside, Mark, my voice of reason, has advised against it, so I shall continue waiting, firm in the knowledge that one day someone else won't have to.

0 comments | Tags: Moorfields, Retinitis Pigmentosa, RP