March 1, 2019 at 8:54 pm #17584530 something female with FSHD
I was officially diagnosed 3 years ago but that was just a formality. My father and siblings also have the condition, so you’d think i’d have plenty of support but its hard talking about it with family. I struggle to open up because i don’t want my parents to feel responsible, it was a different time and genetic counselling wasn’t a thing in the 80’s when my parents started their family. The condition varies amongst us all but i am following in my father’s footsteps (mind the pun), so i know what to expect-ish. However, i am trying to invoke a different mind set where i embrace life and adapt but don’t shy away. I work still work full time and have lots of aspirations. I’d love to hear from fellow peers with the condition.
March 2, 2019 at 1:04 pm #175860Reply To: 30 something female with FSHD
Hello Starbrite from a fellow FHSD person. I am not going to say sufferer because it conveys the wrong message. I was diagnosed nearly many years ago after my son was. In truth it has often been difficult (what life isnt). I lost two careers as a direct result of FHSD. But I have developed new ones, and met so many brilliant people with MD that I wold never have done otherwise. I try and contribute in what small ways I can but age is not helping much either.
I would strongly urge you to keep pushing back against the spectre of FHSD. There are ways around most things I believe so please do keep those aspirations, keep working and above all, take every opportunity you can do do things, experience things and not least of all, spread the word about FHSD and MD in general.
Each one of us experiences MD, or FHSD, in different ways. For me I have the usual but I also have other complications with it. I have a lot of pain, almost everywhere, but after many years of experimenting it is mostly under control. ON the other hand I have met many who have little or no pain, and little in the way of affected movement. My son for example only has involvement of his shoulders.
Please do not try to forecast what will come, it will be different for you. Seeking help at the earliest possible stage will make sure that you keep symptoms to a minimum.
I and others are always here to chat and help though. SO if you do have questions please do come back to us.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015March 5, 2019 at 11:04 am #175900Reply To: 30 something female with FSHD
Hi starbrite and welcome to forum
It can be very difficult to talk to family about the condition or the progression.
Staying positive is a great asset and to an extent being able to reinvent yourself or adapt as the little physical hurdles come up.
In the last few years I have come to embrace the introduction or mechanical aids like power chairs and adapted drive from vehicles.
In short, I work part time, I drive a adapted van direct from my power-chair and play disability sport.
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010March 5, 2019 at 7:03 pm #175906Reply To: 30 something female with FSHD
Thanks for the positive encouragement. I’m very lucky and on the whole have no pain except for the occasional ache in my shoulder but i know how and what triggers it, so it is simple to manage.March 5, 2019 at 7:08 pm #175907Reply To: 30 something female with FSHD
I completely relate to your comment about needing to reinvent yourself, i’ve never thought of it that way before.
I’d love to hear more about disability sport, it’s not something i’ve ever considered. I’ve just got my first mobility scooter to enable me to do long days out and sightsee on holiday, for short walks i am still on my feet.March 8, 2019 at 4:18 am #176078Reply To: 30 something female with FSHD
Hello my name is kurt I’m 25 and have suffered from fsh since I was around 4/5 years old. I’m here looking for people to talk to I have 4 children and all my boys have fsh also. I can answer questions but I also have questions
ThanksKurt hulmeParticipantPosts: 0Joined: 08/03/2019
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