Brief summary: Our 2 year old son Ethan has Congenital Fibre Type Disproportion with Acta 1 gene mutation. This condition affects his respiritory function as well which means he has to wear a non invasive ventilator overnight.
Georgia
( Rest of Europe
)
Affected Person:
Feb 2007
Family type: Siblings:
1
Disabled siblings:
0
Brief summary: My four year old son has been diagnosed with Dysprexia, verbal dysprexia, speech and language disorder and developmental delay. I am hoping to make contact with other families who are in the same position to offer ideas ans support.
location not given
Affected Person:
Jan 1978
Family type: Siblings:
0
Disabled siblings:
0
Brief summary: Looking for anyone who knows anything about congenital fiber type disproportion.
Affected Person:
Mar 1973
Family type: Siblings:
2
Disabled siblings:
0
Username: sassyblonde Relationship:
Female - Same Person
Other conditions:
None
Last updated: 28 Aug 2012
Brief summary: I Have Congenital Fiber Type Disproportion. I am 39 and have one 18 year old son. I would be happy to connect with others sharing the same rare condition and offer understanding, help and support.
Oxfordshire
( South East
)
Affected Person:
Nov 2008
Family type: Siblings:
1
Disabled siblings:
0
Brief summary: We are a two parent,2 children family. Our youngest child was born in 2008. She had a few health issues present from birth and was finally diagnosed with Congenital Fibre-type disproportion myopathy-which comes under the umbrella term of Muscular Dystroph
Turkey
( Rest of Europe
)
Affected Person:
Mar 1986
Family type: Siblings:
7
Disabled siblings:
0
Username: mk016868 Relationship:
Male Affected Adult
Other conditions:
None
Last updated: 28 Oct 2012
Brief summary: I have been diagnosed with Congenital Fibre Type Disproportion and looking for some contacts who have same disease.
West Sussex
( South East
)
Affected Person:
Dec 2011
Family type: Siblings:
0
Disabled siblings:
0
Brief summary: Our one month old son has been diagnosed with congenital fibre type disproportion myopathy after a muscle biopsy. He was born with hypotonia and also has breathing difficulties. We'd like to contact anyone who has information on this disorder.
There are conditions similar or related to this one that have people listed against them. They are listed below. If there are UK Support groups available, they will be indicated by this icon. Click this icon to view the list of available support groups.
|
|
|
|
icon. Click this icon to view the list of available support groups.
