Sturge-Weber Syndrome Community

Newsletter

July 25, 2003
Plans For Web Site

The Sturge-Weber Syndrome Community is changing. Within the next few months, the SWSC plans to launch its new web site. We hope to be able to include more information on issues relating to insurance, research, doctors, and treatment options.

If you have any ideas or suggestions, please contact the SWSC.

Let Us Hear From You

The SWSC wants to hear about your experiences with SWS. Please feel free to submit an article for the next newsletter. You may write about any issue relating to SWS, and membership isn't required to submit an article. We do, however, require your name and an email contact address to verify the validity of submissions.

To write an article, simply click on the "Newsletter" tab, click on the "Write a Newsletter Article" link, type your article in the box provided, and when finished, click the "Submit Article" button.

It's that easy!You can also submit articles via email to: swsmailbox@excite.com.

Laser Treatments
G. Ethington

After about nine laser surgeries, Glen decided he no longer wanted to undergo treatment for his port wine stain (pws.) Glen calls his pws his "surgery face." He said he likes his surgery face, and wants to keep it. Glen had reached a point where the laser treatments didn't make a significant change in the pws, so his mother decided to permit him to halt treatment.

But sometimes a pws can seem to take on a life of its own. His mother noticed that Glen's lower lip had become increasingly larger, and was starting to droop. He would drool in his sleep, and had difficulty closing his mouth while eating. It was possible that Glen's lip would require debulking. In addition to his face, the pws also covered his throat, gums, neck, and ear on the left side of his face.

After a visit to the plastic surgeon, Glen was scheduled for laser surgery. The doctor felt that his lip could benefit from laser treatment, plus a maintenace treatment would be done on his facial pws.

A few hours after the treatment, Glen's face was covered with the typical purple/black spots from the laser. There was some swelling of his face and lower lip. In fact, the lip looked twice the size it was before the treatment. Within 10 days the swelling and spots on his face had almost completly diminished, however his lower lip was still swollen.

At this time, it is not certain if future laser treatments will benefit his lip, or if debulking will eventually become necessary. Glen will have to wait several more weeks to see the full effects of the laser treatment on the lip. The doctor also mentioned that the gum area will need to be treated next, as the gums are enlarged, also.

Surprisingly, Glen didn't appear to experience any discomfort following the surgery. He never complained, and didn't take any medication for pain. There was no blistering or scaring as a result of the treatment, which is credited to the capable hands of his plastic surgeon.

News and Events

Port Wine Stain Conference
Don't forget about the Port Wine Stain Conference in New York City. Registration is required before September 1, 2003. The conference is being held on October 17-18, 2003, and the cost is $50 per family for the conference. If you wish a consultation with the attending physicans, there is an additional $50 per family charge.

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5th Annual New England Picnic
Make plans to attend The 5th Annual New England Sturge-Weber Family Picnic, being held in Sandy Hook, CT on October 4, 2003. Families and friends affected by SWS, KTS, PWS and similar conditions are invited to attend. The event is free, so bring your family and friends and join in the fun. For more information contact Karla and Peter Priepke at pkjprie@aol.com.

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New Members
Please welcome our newest members, Jinny Wylie and Randi Ethington. Jinny's son, Austin, has SWS. The Wylie family lives in South Carolina.

Randi lives in Kentucky, and her nephew, Glen, has SWS

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Ask your doctor(s) to join the SWSC. Or, you can have the SWSC contact the doctor directly if you prefer. Just send us the addresss for the doctor(s) you would like to include, and the SWSC will seek their permission.

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*Please Note:The Sturge-Weber Syndrome Community is not responsible for the accuracy of any information or advice provided in any links, articles or other information provided in the newsletter or on the web site. Please consult a doctor or other medical professional before seeking treatment. All information is provided on an "as is" basis.

Always seek the advice of a physician or other medical professional for diagnosis and treatment. The SWSC and/or VBF are not responsible for the content or accuracy of any information, advice or links on the site.

The SWSC is a branch of the Vascular Birthmarks Foundation. VBF is a fully approved not-for-profit. Your donations are tax deductible.
Federal Tax ID 16-1515227