PERSONAL STORY OF MUSCLE GSD
A VERY POSITIVE ATTITUDE
Aidan was diagnosed in 2017 after an episode of rhabdomyolysis. With over 3 years of building healthy habits and a support system, here Aidan shares his view on living with McArdle’s as a 12 year old. He is his own advocate and everyone helps. It is not easy, but this is his very positive take on it.
Name: Aidan Fernandez
Country: USA
GSD: McArdle’s (GSD5)
Diagnosed at age: 8
Age at writing: 12
Date: 08/2021
At the beginning
At the beginning I was kind of confused. I did not know what McArdle's was; I did not know what to do about it. My mum and I learned mostly from the IamGSD website site and their publications, and the Facebook groups. I shared the information with my friends and some adults. They helped me remember to take breaks and really listen to my body.
A good thing and a bad thing
Sometimes I just bring it up, I share it like it is a good thing. Well, a good thing and a bad thing. In situations where my friends have a bad thing or a worry – I bring up my McArdle’s as well. Like if a friend was worried about a sick pet, I would tell my friends about my condition. I would share my condition and my worries, then make it positive by sharing all the ways I have learned to manage it. Once we started talking about it, it became easier and easier. My friends are supportive and will ask me if I need help or need to take a break.
Aidan strikes a yoga pose at a Grand Canyon viewpoint.
Not focussing on it
Another thing that really helps me is not really focussing on it, but being aware of it – knowing that there are ways to prevent having cramps or rhabdomyolysis and having to go to hospital.
It is definitely hard when sometimes you are unable to do the things you want. But it is weird how it works. Sometimes you could get the annoying feeling like you just can’t do any more. But I slow down or take a break, and I can walk again. In “second-wind” I am full of energy and feel like I can walk forever. I try to remember to drink a lot of water – that is a hard habit, but I know it helps to drink water.
On the trail, resting as necessary.
I decide how to handle it
Telling school is a little different to telling my friends. My teachers know, but they don't understand how to help me, I have to handle it myself. I have to tell them if I don’t feel good. In P.E. class, I might just say that I am sore. The P.E. teacher knows about my condition and how to help, but the whole class does not need to know. Not everyone needs to know about McArdle’s. Even those who do know may not really understand. It is up to me whether I explain, so I may just say that I am sore.
In some situations you really just have to tell people. If you are really sore and can barely move, you need help. You have to tell them about McArdle’s. I just tell them. These days I have my Information Card with me and I can show them that.
Did I really get all the way up here?
Knowing you can manage it really helps
Besides support from people, it really helps to think of McArdle’s like there is always something that will eventually become good about it. It is hard knowing that there is not a cure for McArdle’s (maybe one day). Even though it is not something that can be fixed, you can manage it; knowing that really helps.
Aidan with his dad and his brother, shortly after diagnosis.
A footnote from IamGSD
We believe that diagnosis before the age of 10 is very much easier to become comfortable with than at a later age. Sharing with friends is a great way to help us manage our condition. IamGSD is working towards making both these the norm.