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Congenital Fibre Type Disproportional Myopathy

13 people found, showing 1 to 13

To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.

 

Australia ( Australasia )

Aug 1993  female
Family type: single parent family
Siblings: 2
Disabled siblings: 0
Username: vickstar
Relationship: Mother
Other conditions: None

Last updated: 10 Aug 2011
Brief summary: my daughter has been diagnosed with cftd and i would love to get in contact with anyone else who has this condition please

Devon ( South West )

Oct 2008  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: Dragongirl
Relationship: Mother
Other conditions: None

Last updated: 28 Jul 2011
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 )

Feb 2007  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: jwilliams
Relationship: Mother
Other conditions: None

Last updated: 05 Apr 2013
Brief summary: My son was diagnosed with congenital fiber type disproportion

Lancashire ( North West )

Dec 2004  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: busybee1
Relationship: Mother
Last updated: 15 Apr 2009
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

Jan 1978  female
Family type: not given
Siblings: 0
Disabled siblings: 0
Username: foxylady
Relationship: Female Affected Adult
Other conditions: None

Last updated: 07 Sep 2005
Brief summary: I have congenital Fibre Type Disproportion and want to find a contact.

Oct 2005  male
Family type: not given
Siblings: 1
Disabled siblings: 0
Username: nickie1226
Relationship: Mother
Other conditions:
Arthrogryposis (23)

Last updated: 05 May 2012
Brief summary: Looking for anyone who knows anything about congenital fiber type disproportion.

Mar 1973  not given
Family type: not given
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.

New Zealand ( Australasia )

Mar 2004  male
Family type: two parent family
Siblings: 2
Disabled siblings: 0
Username: Callog
Relationship: Mother
Other conditions: None

Last updated: 12 Jun 2014
Brief summary: My son was diagnosed with congenital fibre type disproportion at age 2, he is now 10 years old. He also has mild cerebral palsy which affects mainly his legs, having the dual diagnosis makes it tough! Would love to network with others/families with CFTD.

Oxfordshire ( South East )

Nov 2008  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: Mimey-Moo
Relationship: Mother
Other conditions: None

Last updated: 16 Nov 2012
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

Surrey ( South East )

Mar 2013  male
Family type: not given
Siblings: 0
Disabled siblings: 0
Username: Devastated!
Relationship: Mother
Other conditions: None

Last updated: 10 Sep 2013
Brief summary: My son is 5 months old and diagnosed with CFTD. We are gutted. I am keen to speak to people who have the same myopathy or have children who have it. I want to know the progress and have someone to relate to. Thanks in advance.

Turkey ( Rest of Europe )

Mar 1986  male
Family type: single parent family
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.

United States of America ( Americas )

Aug 1981  female
Family type: not given
Siblings: 3
Disabled siblings: 1
Username: jazzy266
Relationship: Female - Same Person
Other conditions: None

Last updated: 23 Jul 2013
Brief summary: I am an adult who was diagnosed with an unknown congenital myopathy when I was born. Was officially diagnosed with CFTD about age 25 and have never talked to anyone else with my condition except my sister who has the same thing. would like to meet others

West Sussex ( South East )

Dec 2011  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: Sully11
Relationship: Mother
Other conditions: None

Last updated: 29 Jan 2012
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.

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Related conditions 

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 G icon. Click this icon to view the list of available support groups.

Condition (also listed as) No. of members Support Group
Becker Muscular Dystrophy 4 G
Bethlem Myopathy (Benign Congenital Muscular Dystrophy) 11 -
Central Core Myopathy 4 -
Congenital Muscular Dystrophy (Oculocerebromuscular) 12 -
Distal Muscular Dystrophy (Markesbery distal myopathy) 0 -
Limb Girdle Muscular Dystrophy 0 -
Partial Paralysis 0 -
Ullrich Muscular Dystrophy (Ullrich disease; Ullrich Scleroatonic Muscular Dystrophy; Ullrich Congenital Muscular Dystrophy; UCMD) 10 -

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