Where Do I Fit In?

The fact that it is referred to as a ‘rare disease’ immediately conjures up thoughts of some highly infectious disease; and the fact that it’s also a genetic disorder adds another ‘stigma’.  It would be a lot easier to explain and for people to accept if it was something like cancer or diabetes. That is also difficult to deal with.  It creates yet another barrier

 

It’s safe to say Hunter syndrome affects every part of me. 

How I look, How I feel, How I sound. How I think. Every part of me. So, when someone asks me how I am affected by it, it’s impossible to answer. I was born with this disease. I don’t know what it’s like not have Hunter syndrome.  I guess that makes it easier to cope with because I have nothing to compare it to. My body has never been free of it. I don’t know any different. I am just me.

I still feel a bit of a fraud among the MPS community. Here I am in my fifties with a condition that takes so many at a young age. Even at the conferences I attend. I was always made to feel very welcome and accepted as part of the family but I wasn’t a child and I wasn’t a parent dealing with a child with MPS. I was the lucky one. 

But there is a certain amount of guilt associated with that, particularly at conferences and when mixing with parents of MPS children especially, given that there are so few other adults with MPS. I’m sure it’s not the case but you wonder if parents are looking at you, wondering, or in some cases knowing, their child won’t be as lucky. The idea of conferences is to bring people that share a common bond together. To give them an opportunity to share ideas and to learn from others who are going through a similar ordeal. It’s only natural that mums are going to mix with other mums, and dads are going to mix with other dads to share their knowledge, troubles and fears.

But where do I fit in?  How can I share my fears and problems with mums or dads of children who in many cases won’t get the opportunity to even become an adult? Of course I am always happy to share my story with anyone who is interested but I am very conscious that I am the lucky one.

There is of course another train of thought that I can and should be a source of hope or inspiration to others with MPS, but it is a fine line between being seen as a hope and inspiration and being seen as a reminder of just how cruel MPS can be. 

Being among the oldest patients with MPS in the world offers a feeling of achievement and even pride, but it is also certainly always tinged with a feeling of sadness everytime I hear of another life taken by this insidious disease 

So where do I fit in?  I have a rare medical disorder that affects every part of my body and therefore my daily life, yet it is termed mild. I am legally blind, yet I manage to be independent and my interest is photography. I have a terminal/life shortening condition yet here I am - an adult with what is predominantly a childhood condition.