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Ullrich CMD – Recently Diagnosed 4 Year Old
Hi,
My daughter has recently been diagnosed with UCMD and I was wondering if there is someone who has experience with this form of MD who would be willing to share their experience with me?
I would be keen to hear from both a parent and someone effected by the condition.
Many thanks
Charlotte
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldHi Charlotte Welcome to Forum.
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldHi Charlotte!
I have UCMD and happy to chat to you about my experience. I’m 43 and live independently with support from PAs (carers) in East Sussex.
Happy to chat on here or via PM if you prefer and I may be able to put you in touch with parents of younger children as well.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldHI Sar78,
Thanks for making contact. I would really like to chat but having issues PM you. When I click the link to PM nothing happens.
We live in East Sussex too, we are based near Lewes.
Our concern’s with Josie’s mobility started 2 years ago, when she was 18 months, but we only received the formal diagnosis on 8th July this year.
At the moment, although we have an idea of the progression of the condition, we are not trying to look too far into the future but we are a bit 100 miles an hour trying to make provisions/adaptions in the house etc but again this is hard because we don’t exactly know what we are planning for.
I suppose what I would like to know (if you are happy to share with me) is your experience of life with UCMD and how best we can go about supporting Josie.
I would also be very grateful if you could put me in contact with other parents/families who have/are experiencing the same thing.
Once again, thank you so much for making contact.
Charlotte
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldHi Charlotte
The PM function does seem to be out if action for the time being – thanks for alerting us to that.
I can direct you to some support groups on Facebook that might be of interest if you are on that? I will look out for you on there and we can get in contact that way. I live about 20 mins from you.
The main support group that is UCMD/Collagen VI specific is:
https://www.facebook.com/groups/col6cmd
Sorry i can’t make that a link – that function doesn’t seem to be working either.
Bear with us everyone while we get these gremlins sorted out!!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldCharlotte, if you are not on Facebook, let me know and I will find another way.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldThanks. I have requested to join that group on Facebook and I will try and link with you that way once I am accepted.
Reply To: Ullrich CMD – Recently Diagnosed 4 Year OldHi I admin the Muscular Dystrophy Support Group on Facebook, for those in the UK & Ireland affected by all types of Muscular Dystrophy. If you’re on Facebook you’d be more than welcome to join us x
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