When someone has a rare disease, the isolation makes a strong impact, and the lack of knowledge or care available is very much felt. For many years little was known about Gaucher disease, and I grew up being taken care of by doctors who knew nothing about this rare genetic disease. It's an unpleasant, uncomfortable and quite frankly scary situation to be in the hands of doctors who haven't a clue what's going on.
Thankfully 24 years ago, The Gaucher Clinic, the first I had ever heard of or been to, was established. Once its doors were open, patients started appearing out of the woodwork and flocking to the one place that could really help them. I can't express the immense gratitude I feel towards the Professor who created this clinic, making it his life's work, and is now the leading specialist in Gaucher disease. For the first time in my life, I was taken care of by a doctor who knew all about Gaucher, had good advice to offer, and I received the correct treatment. You cannot imagine the great relief I felt to finally be in such capable, caring, knowledgeable hands.
I go every six months for a regular check up at the Clinic. As soon as I enter the building, oddly I begin to feel good, almost as if knowing I am receiving the very best of care, this has a sort of placebo effect upon me. As soon as I see the Professor who takes care of me, I naturally smile, even if in terrible pain, for I am always glad to see his face, and the dedicated staff that work as a team. Just a few moments sitting in the Professor's company - strange as this may sound, makes me feel better, and I often wonder if he realises how ill I feel, for whenever he sees me, I appear cheery and with a sense of humour. It must be hard for him to see past this exterior, and understand what is really going on. I think there is a lot more to the placebo effect than we understand.