Brief summary: My child has been diagnosed with Phacomatosis pigmentokeratotica seizure disorder brittle bones fibrous dysplasia skeletal dysplasia right hemiplegia, hypermobility, ?Lupus, reynauds disease, and EDS type 3 hypermobility, chronic pain syndrome, adren
Surrey
( South East
)
Affected Person:
Oct 1996
Family type: Siblings:
2
Disabled siblings:
0
Brief summary: I have 2 children, seemingly healthy, until puberty, and intelligent, now 16 & 19, both epileptic(maybe JME)
I, the mom, have lieden v, as do they. I am wondering if there is any connection between their leiden and their epilepsy? We have no E on eith
Brief summary: My Daughter, now 6, has Dravet syndrome, SCN1A muation. Mental and physical delays. I have information on organizations and resources to help you. Feel free to contact me.
You are not alone, Dina
Affected Person:
Jan 1990
Family type: Siblings:
1
Disabled siblings:
1
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.
|
|
|
|
Add Yourself To This Condition. A minimum of Silver membership is required, but it's free and secure. 
icon. Click this icon to view the list of available support groups.
