Sturge-Weber Syndrome is Rare
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Sturge-Weber Syndrome is Rare

Sturge-Weber Syndrome (SWS) is rare. It is a congenital neurological disorder present at birth. The most common physical notation is the port-wine stain (PWS) birthmark. No two cases are identical. Each case must be treated on an individual basis. This article answers what is Sturge-Weber Syndrome and how can it be diagnosed and how it can be treated.

Sturge-Weber Syndrome (SWS) is rare. It is a congenital neurological disorder present at birth. The most common physical notation is the port-wine stain (PWS) birthmark. No two cases are identical. Each case must be treated on an individual basis.

Who is at Risk?

The cause and risk factors of this rare disorder are unknown. Scientists do not, according to the National Institute of Health (NIH), believe the disease to be inherited.

Symptoms

There are a few symptoms in addition to the telltale port-wine stain mark. The PWS can range in color as well from pale pink to a dark almost purple color. Not all symptoms need to be present and not all will necessarily occur at birth, according to the Sturge-Weber Syndrome Community.

The NIH identifies the additional symptoms as:

  • Seizures
  • Paralysis or weakness on one side of the body
  • Learning disabilities – in some cases Attention Deficit Hyperactivity Disorder (ADHD)
  • Glaucoma

TESTING

A CTscan, an MRI scan and X-rays will test to confirm the disorder. Brain involvement is the key symptom to diagnosing someone as having SWS or not.

TREATMENT

Treatment can differ depending on the symptoms the patient exhibits. Seizures may be treated with anticonvulsant medications or even brain surgery. Glaucoma is treated with eye drops or, in more severe cases, eye surgery. The tell tale port-wine stains may be treated with laser therapy. Physical therapy may be ordered for paralysis or weakness.

There is a current theory that the modified Atkins diet (MAD) may be used as a dietary treatment. The diet does not restrict fluids or calories, making it than the ketogenic diet for children.[1]

As the patient ages, the skin may thicken and form nodules. These nodules can burst and bleed.

You or your child can not “catch’ this disorder. The disorder is not – in most cases – life threatening. While there is no known prevention for Sturge-Weber Syndrome, patients can be treated and live normal lives. For more information on Sturge-Weber Syndrome, visit the Sturge-Weber Syndrome Community’s site at http://swscommunity.org/.

 

NOTE:

This article is not intended to take the place of the medical advice from a professional. If you have the port wine stain and/or any of the other symptoms, contact your family doctor to schedule testing and begin treatment under his care.

ABOUT JEANNE RUCZHAK-ECKMAN

Jeanne Ruczhak-Eckman began writing in 1985, with her work appearing in several local newspapers. From 2003-2009, she spearheaded an online newspaper company, which had two newspapers, the PA Farm News and SolancoNews.com. The latter covered everything from hometown heroes and new businesses to the Nickel Mines Shooting. She received her Bachelor of Arts in journalism from LockHavenUniversity, and was diagnosed with diabetes in 2009. Her interests include learning more about diabetes and how to deal with it, genealogy, history/travel, gaming and Orthodoxy. You may contact Jeanne with your comments.


[1] Kossoff, Eric H. et al. “A pilot study of the modified Atkins diet for Sturge—Weber syndrome”  Epilepsy Res. 2010. http://swscommunity.org/MAD-SWS.pdf

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Comments (1)

Jeanne, you did a wonderful job education on this terrible syndrome. I would love to read more articles like this and hopefully when they find a cure, you could write about that too. Tweeted and recommended. Blessings, Chris

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