↑ Return to FSHD ~ My story

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By the age of 10 there were signs not everything was as it should be. I had poor posture, was rather clumsy and tended to breathe through my mouth. During a medical at school my mum raised her concerns. I was then sent along to the local clinic once a week to do exercises which would hopefully improve my posture and breathing. Apparently I was just being lazy. I attended these classes for over a year. I hated them and felt really singled out. When I was 12 my mum asked me to carry on painting a ceiling for her while she just checked on something. I just suddenly found myself saying “I can’t, I can’t raise my arms “. After a trip to the doctors I was booked into hospital, where I had numerous tests ending with a muscle biopsy… then the diagnosis. I then spent a few days more in hospital being poked and prodded and feeling like the proverbial guinea pig. After the diagnosis my mum and I joined the local MD group. No one in the family had been diagnosed with FSH before so I knew nothing about it and didn’t know what to expect. The only people I had contact with at the MD group were a few lads with DMD which of course made me really fear for what lay ahead. My school were not informed which meant I had to attend PE lessons just like everyone else. I really began to struggle and was always the last to be chosen when teams were picked so I started to skip lessons. One day I got caught and was sent to the head mistress. When she asked why, I told her I had MD and couldn’t keep up. I never had to attend another PE class. Another incident at school was in an English lesson. I wasn’t paying attention and the teacher shouted “Hey you, stop looking so gormless and pay attention”… because I breathed through my mouth people did tend to think I was a little gormless but to have him shout it out in front of a whole class was mortifying. I also had to give up playing the violin. Not such a hardship as I didn’t particularly enjoy it. I was unable to keep my violin up and it made the orchestra look untidy according to our pompous Music Teacher. One other rather ironic incident at school was in one of my more rebellious moments I etched my initials over an equals sign with the initials of my boyfriend … later to be my husband… underneath. I have always been very conscious about my mouth and as far back as I can remember I’ve been picked on for it… not quite so these days…( thank goodness for Angelina Jolie and her fuller lips that’s all I can say). Anyway my initials at the time were “T C” and my boyfriends “L P “. The next time I went into that classroom some someone had inserted an “I” between the “L & P” and added an “s”….. T C = LIPS . I spent the whole of that lesson scratching it out and fighting back the tears. I grew to hate school and was really glad when it was time to leave. While I was at school I had a part time job at our local Supermarket. It just seemed so easy to slip into the full time job when I left school. I worked on the checkouts and at that time there weren’t conveyor belts you had to lift the shopping from one trolley to the next. With my shoulders getting weaker I was struggling with some of the larger items… 10lb bag of potatoes etc… I dreaded Christmas because of the fat turkeys I had to lift and not forgetting I was doing this one handed. I got married at 20 and wanted to start a family at some point so I went to seek advice from my doctor who arranged for me to see some consultant or other. This was the first person I had seen in relation to FSH since my diagnosis. He hadn’t got a clue about FSH, Had never met anyone with FSH. I had to explain what I knew, which to be frank wasn’t really that much at that stage. He examined me in a fashion, far more for his own curiosity then for any medical purpose. His advice was……… Don’t have children!! …. If I didn’t have children then there would be no way of passing FSH on and the condition would die with me. I chose not to take his advice. I really wanted children, if they had FSH then I would have to explain to them that I had wanted them so much I was prepared to take that risk and that I hoped they would never hold that decision against me. As to what impact the pregnancy would have on me personally I wouldn’t know until I went through it. Luckily I sailed through my pregnancies. I was given no special treatment, no extra checks and ended up with two beautiful sons. It was quite hard when they were little, silly things like not being able to lift them if they fell or carry them upstairs to bed but where there’s a will there’s a way and we muddled through as a family. My boys are now in their 20’s, both seem fit and healthy and have as yet not been tested for FSH, their choice entirely. I am also a very proud grandma of a beautiful little girl. My FSH is obviously getting worse but it’s just made me more determined to do what I can while I can. The last year or so has seen me going around a race track at high speeds in a Lotus, taking the controls in a Cherokee airplane and doing a paraglide hopefully raising some much needed funds for the Neuromuscular Center in Winsford. Life is an adventure and one that needs living so that is exactly what I intend on doing. Traceyanne Pilato Copyright May 2009