Sturge-Weber Syndrome Awareness Month

May is Sturge-Weber Syndrome Awareness Month, and this month encourages everyone to learn more about this rare condition, support those who have it, and advocate for increased research to strive for a cure.

Sturge-Weber Syndrome (SWS) is a vascular disorder characterized by the association of abnormal blood vessels in the brain, a port-wine birthmark, and various eye abnormalities. This rare condition affects one in approximately 20,000 to 50,000 newborns.

The cause of this condition is a mutation of the GNAQ gene that occurs randomly in developing embryos. During this month, everyone is encouraged to come together and join events that attempt to raise awareness about this condition.

The History of Sturge-Weber Syndrome Awareness Month

This month was created a few years ago by The Sturge-Weber Foundation. Although we don’t know the specific year they created this observance, we do know they created it to raise the public’s awareness about this condition and the people who have it.

It was also created to further the foundation’s goals of improving the quality of life for people with SWS and to help fund research for advanced treatments for this condition.

Facts About SWS Syndrome

We wanted to give all of our readers as many facts about SWS as we could so they’d have a head start on their research. That’s why we did some research ourselves and found out everything we could about this condition. The facts that we learned can be found in the following list. We sincerely hope that they are helpful to anyone looking to learn more about SWS.

  • Most babies who have SWS have a blood vessel tumor in the tissue covering their brain.
  • Newborns with this condition also have a birthmark on their faces.
  • Abnormal blood vessels that grow on the face cause the red or purple birthmark.
  • Abnormal blood vessels can also occur in the brain and cause strokes or brain damage.
  • Symptoms of SWS include weakness on one side of the body, seizures, and difficulty seeing.
  • Other symptoms of this condition include learning difficulties, increased eye pressure, and an increased risk of stroke.
  • SWS can be treated with surgeries, medications, low-dose aspirin, and other treatments.

Observing Sturge-Weber Syndrome Awareness Month

Everyone is encouraged to educate themselves about SWS. This can be done by doing a little bit of research online or simply by visiting the website for the Sturge-Weber Foundation.

People should also seek out SWS forums, symposiums, and events in their area or online. And finally, everyone is encouraged to spread the word about this month using the hashtag #SWSAwarenessMonth on social media.

When is it?
This year (2024)
May 1 Wednesday
Next year (2025)
May 1 Thursday
Last year (2023)
May 1 Monday
Awareness & Cause, Health & Body