November 30, 2017 at 12:04 pm #153162Central Core Disease – got some info but not sure what prognosis is
I know a friend who has been diagnosed with Central Core Disease since early childhood (18 months). He goes for regular annual checkup with a consultant Neurologist who he is not showing any signs of deterioration and that his condition is mild form of CCD non-progressive with normal life span. He is now around 27 years old.
He does have difficulty walking up stairs and some observable difference in his gait whilst walking, otherwise generally OK.
There is not much info on this on the internet and not really anyone to speak to about experiences later in life in terms of physical or emotional aspects. Just relying on doctors is fine to a point, but it is worrying for the future as he is looking to get married and being congenital condition it has the potential to affect any children.
Really would like to hear experiences of others who are in a similar situation and whether the diagnosis of ‘non-progressive’ turned out to be correct or not. Also experiences on how family has coped with this. Any help appreciated please.
ThanksrsrehalParticipantPosts: 0Joined: 30/11/2017November 30, 2017 at 12:28 pm #153167Reply To: Central Core Disease – got some info but not sure what prognosis is
Forgot to mention that he has a siblings 5 years older than him who has CCD too and similarity just a mild form – so it does run in the family.
Whilst everyone is unique would be good to hear the experience of others. ThanksrsrehalParticipantPosts: 0Joined: 30/11/2017November 30, 2017 at 4:03 pm #153177Reply To: Central Core Disease – got some info but not sure what prognosis is
I work at Muscular Dystrophy UK, thank you for your post. We actually have one person in our peer support network who has the condition, I could see if they would be happy to contact you or your friend to discuss their experiences. Additionally we do have information about inheritance of the conditions we support which you can access. It is probably best to discuss this with a genetic counselor and a health care professional in regards to options when starting a family. Please do email email@example.com if you would be interested in speaking with anyone and we can organise this.
Peer support: http://www.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/someone-to-talk-to/
JoelJoelRParticipantPosts: 0Joined: 01/12/2015December 5, 2017 at 7:33 pm #153282Reply To: Central Core Disease – got some info but not sure what prognosis is
hi and welcome to forum
CCD seems to come under the bracket of CMD related conditions and was in fact one of my previous Diagnosis before my final one was confirmed.
Your friend might want to join the facebook group below and we would love to see them on this forum.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010
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