FAQ - Sturge-Weber Syndrome
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what can happen to a person with sturge-weber syndrome once they are pregnant?


A woman with Sturge-Weber Syndrome who is pregnant must be carefully managed to avoid possible complications, due to a susceptibility to seizures and to problems of the eye.

The hormonal changes of pregnancy can adversely affect vision in many women.

Do you have glaucoma and if so have you had surgery or is it being treated successfully?  (+ info)

Sturge weber patients with Fibromyalgia?


I was diagnosed with Sturge Weber at age 16. This is a seizure condition typically associated with Glaucoma and a port wine stain birth mark. About 1 1/2 years ago I also found out I have Fibromyalgia. I don't believe there is any connection between the two but I wondered if anyone else out there happened to have both? I feel like I am a loner since Sturge is quite rare...
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I have Fibromyalgia, not Sturge Weber..
Remember the word rare, doesn't mean impossible..
some doctors like to place lables on us, like society for what they often don't understand, to make it more understandable to them.. when often it is just that a label.. it doesn't make you the label..
your not a loner.. I use to have a boss who spent hundreds of thousands of dollars trying to find an answer for her medical concerns, they finally named the disorder after her, she was the only one,/ first to have the symptoms. It doesn't and didn't make her any more or less special or unigue to the problem just because she had her name attached..
discomfort, pain, concerns aren't fun, they just are.
I personally feel all the chemical additives, and things around us affect us so greatly.. beyond what i think we want to accept. truth be known.
good luck to you in the future..  (+ info)

this is for the doctors it is about hemorrhagic telangiectasia also known as oslo weber rendu syndrome?


so i have to do project for school and i was wondering HOW it can be detected prenatally. i know that it is possible but like i dont know exactly how. so any information would be very very appreciated. thanks a bunch
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Nangami g,
The diagnosis of hereditary hemorrhagic telangiectasia (HHT) – also Rendu-Osler-Weber disease, Rendu-Osler-Weber syndrome - is based on family history and the presence of cutaneous or mucocutaneous telangiectases or large visceral AVMs. HHT is caused by a mutation in either ENG, the gene encoding endoglin or ACVRL1, the gene encoding the activin receptor. Molecular genetic testing of these genes detects mutations in 60-80% of individuals with HHT and is available on a clinical basis. You may find the link which I add of some assistance in preparing your project. I wish you well.

http://www.hht.org/
about-hht/

Hope this helps
matador 89  (+ info)

Sturge Weber and Its symptoms?


Does anyone out that has Sturge Weber, have additional symptoms besides the typical seizures, port wine stain, Glaucoma and Calcifications on the brain that are associted with it? I am haveing muscular slelatol pain, frequent headaches, neck aches, back pain, arm pain, numbness and tingling in the feet . I was told it was Fibromyalgia but I am just trying to see what other types of pain that people with Sturge are experiencing? Thanks for your imput. I hurt everyday and don't know what to do...
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I don't have Sturge-Weber but I do have fibromyalgia. All of the symptoms that you are having that are not typical Sturge-Weber symptoms are common fibromyalgia symptoms. Had the pain & tingling been on one side, I might believe it was Sturge-Weber, but if it is on both sides it sounds more like fibromyalgia. I hope this is helpful to you.  (+ info)

Is there any one who got an information regarding Christian Weber Syndrome disease.?


Any help would be greatly appreciated.
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  (+ info)

. If child has a limp period at 4 month is it high then 8 % chance of Sturge Weber?


PossibleSturge weber and small port wine stain of forehead near the supratrochlear nerve at one month old.The other port wine effect left eye corner and left upper eye lid Note port wine lighter at 5 month old There is only two month c scan and four month c scan and no MRI done at the time.
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Impossible to say, the child needs further investigation.  (+ info)

Sturge-Weber Syndrom?...why are babies born with this ?


im pregnantn and worried
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It has nothing to do with what you eat and nothing to do with magic either, no one knows why it happens...it just does. Unfortunatly, worrying will not prevent it from happening either! Good news though it does not run in families, so if you have a family member or you yourself have it , the chance of your baby having it are not higher than anyone elses. I've added a link to the SWS Foundation website, which is full of good information.  (+ info)

My sis has Klippel trenaunay weber syndrome and she's pregnant what are the risks?


http://humrep.oxfordjournals.org/cgi/content/abstract/11/11/2544

http://www.ncbi.nlm.nih.gov/pubmed/2553510

Hope this helps. It was the best I could find.  (+ info)

what is Klippel Trenaunay Weber Syndrome?


Symptoms and diagnosis

Although the cause and processes surrounding Klippel-Trenaunay Syndrome (KTS) are poorly understood, the birth defect is diagnosed by the presence of a combination of these symptoms (often on approximately ¼ of the body, though some cases may present more of less affected tissue):
One or more distinctive port-wine stains with sharp borders[citation needed]
Varicose veins
Hypertrophy of bony and soft tissues, that may lead to local gigantism or shrinking.
An improperly developed lymph system  (+ info)

What is the name of the syndrome that the person may appear to have facial characteristics of down's syndrome?


I previously watched a documentary about sufferers of a syndrome whose facial features appeared to be down's syndrome but it wasn't down's syndrome. The grow to be quite large adults and have special needs. Does anyone know the name of this condition?
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Klinefelter syndrome  (+ info)

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