Here are some suggested organisations that offer expert advice on SN.
Muscular Dystrophy(8 Posts)
I was just wondering if there's anyone who's child has been diagnosed with Muscular Dustophy? DS has been diagnosed with Becker's MD (although he does have some other issues with speech/global development delay).
I am just struggling because we live in an isolated place where there are no other children with MD or any kind of support groups. I've tried googling about it but it seems to be very unusual to be diagnosed with it so early. They originally thought it was Duchenne but the genetics tests showed Beckers. The neutrologist has been useless - he only spoke to us to confirm the diagnosis, he hasn't given us any idea of what to expect, information about treatment going forward or any advice. We have no one to speak to about this and I am really struggling to cope and my anxiety levels are through the roof. I just feel abandoned and overwhelmed by the amount of agencies that have suddenly got involved (physio/SALT/OT/etc), especially when they don't seem to talk to each other or have any idea or experience of the condition so I am constantly repeating myself again and again.
I was just wondering if anyone here has some experience of this condition and could offer any advice on how to cope with it and help your child cope with it?
Hi. My son doesn't have muscular dystrophy but he dies have a rare genetic disease, tuberous sclerosis . He was diagnosed at 3 months. I would recommend joining the UK muscular dystrophy support group. Ring their help line. I am sure they will be happy to chat to you about stuff. Read as much as you can. Beckers might explain the other delays too. How old is your son?
Try facebook for specific groups there are many closed groups on there. Do a search by the name of the condition and see what comes up.
I agree Fb groups can be invaluable. Everyone there is there for the same reason.
My son was diagnosed with BMD age 3. He's now 5. It's a very uncertain road because Becker is so rare there aren't enough case studies to document how it will progress and it seems each case is different. MD UK is the best place to start for support. It has lots of information about MD in general and specific info on Becker. They have support people you can contact for emotional support, help with DLA, equipment, everything. They'll also connect you to your local link. Mine is the North East and Cumbria and they have helped me so much and become friends. There are only 4 muscle specialist centres in the U.K. You should be referred to one of those. We're lucky as we're quite close to the Newcastle one. MD is rare so I'm afraid you will find yourself repeating info and knowing more probably than your GP. That's why you need to get to the muscle centre as you'll see everyone you need to on one visit. On FB there are a couple of sites for BMD. The best one I've found is for parents of children with BMD. It's just changed its name and I've forgotten it but it should come up in a search.
We've had our diagnosis for 18 mths now. It's hard. If you want to talk anything through or ask any questions, please don't hesitate to contact me.
Sending lots of love and support. xx
Thank you all so much for your replies. I will have a look on Facebook for groups, the idea of joining one seems so daunting but I do realise that I just have to accept that this is part of our lives now and get on with it.
Wannabesupermummy my little boy is 3. I can't believe I've managed to find someone who has had a diagnosis at the same age, as it's so rare to be diagnosed this young - most cases I read of are teens or later. Would it be possible to maybe PM you a few questions if that's OK?
It's just so hard not having any idea of timescale with the condition - I presume because my son's so young that it's a more severe case but there's so little information about BMD as it is it's hard to know. Yes, definitely have experienced knowing more than the GP and pretty much every practioner where we are. There hasn't been a case of MD diagnosed in our area for over 15 years. I'll have a look for that Facebook group you mentioned as well.
Thank you all so much again xx
Of course you can message me. I haven't met anyone else with BMD but I have a few contacts on FB whose children are little bit older than ours and I often message them to ask how they handled certain things. It's invaluable to have support. xxx
So glad you found someone to link up with Kipper , for all their issues MN and FB can be great places to get support.
Good luck 💐
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