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From The<br />
I was diagnosed with FSHD in my early twenties and have been using a wheelchair<br />
for 16 years. It was difficult to accept in the beginning but after a while you<br />
realise that you cannot change anything and a wheelchair makes a huge difference.<br />
It takes a lot of energy to shower, get dressed, eat, move around. I don’t<br />
complain, as there are many people in worse situations than I am. I try to do as<br />
much every day as I can. l try to stay positive and see the other blessings in my<br />
life, but it's hard not to wonder “what if...?” or “why did this happen to me?” It's<br />
a slowly progressing disease, but it's a very traumatising, suffocating disease<br />
at the same time.<br />
When I was diagnosed the only thing I thought of was the possibility that researchers<br />
would soon fi nd a cure. As time went by I realised this was not going<br />
to happen, but I still pray and believe that a cure will be found in the near<br />
future.<br />
I did not want to meet other people, but after I was invited to a meeting by Tina de Vente, who was<br />
working at the <strong>MDF</strong> offices at the time, I decided to meet with other affected members. After meeting parents<br />
of children diagnosed with Duchenne muscular dystrophy, my outlook changed. I realised it was selfi sh of me<br />
to think a cure should be found for my own condition and not to be as concerned about all the other conditions<br />
as well.<br />
I realised there were many people and families who needed help and the foundation should include and reach<br />
out to everybody affected by muscle diseases. Over the years I have met and become friends with many affected<br />
people and families. Families affected by muscle-wasting conditions are experts in what it means to live<br />
with these different conditions, and it is important that they share information and support each other.<br />
In this issue you will read of personal stories and awareness events. As usual you will also fi nd MD information<br />
and research articles.<br />
Thank you to everybody who has supported our foundation over the years. For those who are able to make<br />
donations, we thank you from the bottom of our hearts.<br />
Warmest greetings of the season, and best wishes for good health and happiness in 2018.<br />
Until next year!<br />
Regards<br />
Pieter Joubert<br />
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