PERSONAL STORY OF MUSCLE GSD
LEARNING HOW TO MANAGE
My name is Hans and I live in Germany. I am 20 years old and was diagnosed with McArdle’s at the age of 14. Before I was diagnosed I had a very severe episode of rhabdomyolysis with acute renal failure, but now I have learnt how to manage my condition and feel confident about avoiding rhabdomyolysis.
First symptoms at age 3
Probably the first time I experienced symptoms of McArdle disease was at the age of 3. After a fever cramp (quite common in young children) my urine was reddish. Everyone thought it had something to do with an infection of my urinary tract, but those tests didn’t find anything and they didn’t investigate any further.
With hindsight it is quite clear that my McArdle disease was responsible for the red color of my urine, but at that time no one knew.
Swimming, basketball, skiing
I was very active before my diagnosis. I went swimming and played basketball in a youth team. But I could not measure up to my team mates, running and especially sprinting was very difficult for me. The trainers always told me that if I trained enough I could match the others, which of course did not work out. Because of all that pressure, I started to avoid the training sessions and finally dropped out of the team when I was 12.
Two years later I went skiing in the Austrian alps with my school. I was, and maybe still am, good at skiing so I looked forward to it. But the first day changed a lot of that. It snowed heavily, so the ski runs were in bad shape. Apart from that we had to run in the deep snow as a warmup for the actual skiing. In the evening I went to the toilet and noticed that my urine was reddish. This was the first time I really knew that something was wrong. But it went away after a day, and I put it out of my mind. Which I now know was not a good idea.
The first major rhabdomyolysis
In September the same year (2016) on the first day of the new school year, I carried a heavy bag with all the new school books. In the evening I went swimming, because of the hot weather, but the water was very cold, and I started shivering. The next day we had sport in the first two hours of school. We did a tough sprinting game and after it I felt as though I had a contracture in every muscle of my body. Two hours later I nearly collapsed because I was so dizzy. Again, I noticed that my urine had a different color, but this time much darker than ever before. I thought that it would go away like it did the last time but, it actually got worse.
The next evening I went to hospital, because I was in a very bad way. I could not eat or drink anything, I was throwing up the whole time. They did a lot of tests and found out that I was suffering from acute kidney failure. After four weeks in the hospital, five sessions of dialysis and many blood tests, my kidneys finally started working again and I could get out of hospital. Whilst there they had conducted a muscle biopsy and, after another four weeks, I received the diagnosis of McArdle disease (since confirmed by genetic testing). But sadly, nobody could tell me what to do. My kidney function was good, and still is, but I received no advice regarding McArdle’s.
Trying to figure it out
Until 2022 I thought I could figure it out myself, but I didn’t manage it. I again had some bad episodes of rhabdomyolysis – for example after climbing stairs and swimming in cold water. I tried to exercise, but it didn’t work as I expected because I was not getting into second-wind.
Me resting on top of the Butte in Alaska.
Exhaustion on my face at the top of a climb near Anchorage, Alaska.
My selfie in Dresden on a bridge over the Elbe.
Me resting on top of the Butte in Alaska.
Scroll through a few photos of my story. Click to enlarge.
Attending the walking course
After four episodes of rhabdomyolysis in two years, I decided that I needed some help. I contacted Andrew Wakelin in the UK and went on the 2022 walking course in Pembrokeshire, Wales. This was probably one of the best decisions I ever made. I learned so much about McArdle’s and how to get into second-wind. I met many amazing people from all around the world. It was such a good time and I will probably remember it for the rest of my life.
On reflection I realise that it would have been better to get this sort of help shortly after my diagnosis, but at least I have done it now. I can recommend it to everyone who is struggling with McArdle’s, it is so valuable to share your experiences with people who understand it.
Something active every day
After the walking course I started to do something active every day. I am rowing on a rowing machine, I do a lot of hiking, and of course I ride my E-Bike. It is so important for everyone to work out regularly, but especially for us. Now I am studying in Dresden (Germany) to become an elementary school teacher. It is difficult to manage university and training, but often I just opt to walk home instead of taking the bus. I try to do something active for at least half an hour every day. It really helps me to find my limits and not to overstep the mark, as I so often did in the past.
A NOTE FROM ANDREW WAKELIN, IamGSD.
It was great to have Hans come from Germany to join us on the walking course. His experience ties in very well with two of IamGSD’s campaigns – promoting understanding of the condition, and encouraging regular physical activity. We are working towards making these courses more widely available around the world. The German GSD Association, SHG, has already run two short courses in Germany.