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Cornelia De Lange Syndrome
also listed as Status Degenerativus Typus Amstelodamensis,Amsterdam Dwarfism,Brachman de Lange,Status Degenerativus Typus Amstelodamensis,De Lange I Syndrome
12 people found, showing 1 to 12
To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.
Cheshire East
( North West
)
Affected Person:
Feb 2005
Family type: Siblings:
4
Disabled siblings:
0
Brief summary: Hi, my 3 year old son is moderately affected with cdls. He is currently tube fed paediasire and has a lot of reflux but despite this he is growing really well! I would love to hear from anyone with a cdls child as we seem to be few and far between!!!
Brief summary: Daniel was diagnosed as being classically affected with CdLS was born 2nd september he is fed by gastrostomy and wont take anything by mouth he has alot of the syndromes symptoms but has both arms and no heart defects
England
Affected Person:
Mar 1999
Family type: Siblings:
0
Disabled siblings:
0
Brief summary: Mum to 8 year old boy who has Cornelia de lange syndrome, complex congenital heart disease, autistic spectrum disorder and severe SLT disorders and plenty more! My lad goes to a moderate - severe SN school.
Affected Person:
Mar 2006
Family type: Siblings:
0
Disabled siblings:
0
Brief summary: She has bilateral phacomelia
of her upper arms. Echocardiography showed a patent ductus arteriosus and
ventricular septal defect, with an overiding aorta, at the moment she
is on
furosemide and Kcl to manage her heart condition, since she developed
Affected Person:
Jun 2000
Family type: Siblings:
3
Disabled siblings:
0
Brief summary: My son has learning problems and some slight behavioural problems, it is thought that he has a very mild form of CdLS, or a 3q duplication phenocopy, He is a very happy child in a main stream school, although I am not sure how much longer he will remain t
Brief summary: Heart defect (VSD and ASD) found at 8 weeks and chromosome testing to look for syndrome as he also had a small head, low set ears, undescended testes and reflux. Testing showed nothing, however detailed DNA tests recently diagnosed deletion of gene in ch
Scotland
Affected Person:
Nov 2006
Family type: Siblings:
0
Disabled siblings:
0
Brief summary: Sonny was born last July*******weeks early and was diagnosed with suspected cdls by day 2. He is my 4th child and 1st to have any health problems.
If a UK Support group is available for this condition you can access their details by using the above link and clicking on the blue 'Is there support?' option on the right menu of the screen.