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



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)

Does anyone know how often Klippel-Trenaunay Syndrome Occurs?

Like 1 in 100000? 1 in 10000000? I know it's a rare disease and approximately 200,000 people in US have it, just would like to know more.
I searched google and I couldn't find anything---

search google  (+ info)

How many people on the Earth have Klippel-Trenaunay syndome?

I know that Klippel-Trenaunay syndrome is a very rare circulatory disease but how rare is it? How many people have it?

over 700 worldwide  (+ info)

Klippel-Trenaunay Syndrome (KTS) Port Wine Stain & Leg Length discrepancies..?

My 2 year old daughter was born with a "port wine stain" that just about covers her right leg and goes up her right side of her pubic area as well as her right butt cheek. This was thought of as no biggie.. it actually seems to be fading as she has "filled out"...

This was no concern untill about 3 weeks ago when I noticed after her bath, that one leg seemed a little wider than the other. I broke out the measuring tape and began measuring. I noticed that EVERYTHING about her right leg was bigger than her left. Even the lenghth was off. I took her to a Pediatric Orthopedic Surgery Dr, who confirmed with x-rays that her right femur is 1 cm longer and her right tibia is .5 cm longer, making her right leg 1.5 cm longer than her left leg. Up to 2cm is considered to be normal, but for her to be off already, makes us believe that this will just progressively get worse. We are going to Cedars-Sinai Genetics Clinic as soon as they can get us in..( i filled out a questionaire and faxed it in today)

I know this is a very RARE condition as the stats say it affects like 1 in 20-40,000 children... but I was wondering if there is anyone who has a child with this, or if anybody reading this has this syndrome?

I also have a 2 year old daughter (almost 3 now), with KTS. It affects her left leg + buttock area, as well as her left side and hand. Her affected leg is longer & wider than the other; several fingers on her hand are also larger than the other side. We were lucky; she was diagnosed within a few weeks of birth so we found the right specialists early on.

It was really upsetting to learn about her syndrome and I often worry about her being teased about looking "different". However, she's a real spitfire and it doesn't slow her down in the least. The big thing to watch out for are cellulitis infections. Easily cured by antibiotics, but they can cause real damage if you don't catch them in time.

Feel free to write back if you have any questions. Jen  (+ 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

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.


Hope this helps
matador 89  (+ info)

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

Any help would be greatly appreciated.

  (+ info)

does any one know about klippel-tranauny syndrome?

my son has klippel tranaunay syndrome we are trying to find a dr who can work with him

Klippel-Trenaunay-Weber Syndrome; KTS; Angio-osteohypertrophy; Nevus varicosus osteohypertrophicus syndrome; Hemangiectasia hypertrophicans; Nevus verucosus hypertrophicans
Klippel-Trenaunay syndrome is a group of findings consisting of:

Multiple port wine stains or other blood vessel malformations (dark spots of skin).
Excessive growth of bones and soft tissue in the area of increased blood vessels (this may also occur in areas without increased vascularity). This occurs most commonly in the lower limbs, but may affect any limb, the face and head, or internal organs.
Varicose veins.
Most cases of Klippel-Trenaunay Syndrome occur for no apparent reason, although a few cases are thought to be inherited disorders (possibly passed as an autosomal dominant trait with low penetrance)

Most individuals with Klippel-Trenaunay Syndrome do well despite their cosmetic appearance, although there can be associated psychological problems.

possible a dermatologist might be able to help you with any other indepth questions you may have  (+ info)

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)

Klippel Feil Syndrome and alternative medicine?

my friend has Klippel Feil Syndrome, and her neck is slowly getting more unstable and starting to become painful w/certain movements like running so that in a few months or years she will probably need to get surgery to fuse bones in her neck. My question is: other than physical therapy, is there anything she can do, any herbs or vitamins or natural supplements she could take etc. to strengthen her neck or slow the degeneration and perhaps prolong the time she has before the neck becomes too unstable and needs surgery? Any ideas will be really appreciated, there is such little information about KFS that i can find. Thanks

There are no specific remedies known to me in homeopathy for Klippel Feil Syndrome. But all medicines helpful in wasting of spine, spinal degeneration and ankylosing spondilitis hold good for Klippel Feil.
The following medicines are useful:

Phosphorus (this cures many bone deformity and muscular tone(Hypoclonic/hypertonic) problems)

Calcaria Carb and Calcaria Phos to correct the calcium factors involved.

Silicea -Goes right into bones and correct.

Phosphoric Acid

Picricum Acidum - Corrects degeneration of spine.

Formicum Acidum - Pain in spinal chord.

Hypericum - Injuries to spine, nerve damages and consequent nutrient-defcient maladies.

Thiosinaminum - Wasting spinal marrow.

Heracleum S 3C - Increases the functional activity of the spine. A great spine stimulent.



Veratrum virde (cannot hold head up, Pain from nape of neck)

Cocculus Indicus/Rhus Tox.

and other medicines according to symptoms. Medicines and its symptoms can be checked from the following link:

Medicines should be taken in consultation and in direct supervision of a homeo doctor.  (+ info)

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