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Sturge-Weber UK is a voluntary support group for families and adults affected by Sturge Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990.

Did you know one in every 50,000 people are born with Sturge-Weber syndrome?

• Sturge-weber syndrome forms in the first 3-4 months of pregnancy.

• Two out of every three children that have Sturge-Weber syndrome have seizures.                                                                                                                                                                                                                      HOW DOES IT AFFECT PEOPLE?

• • Sturge-weber affects people in many different ways, people with Sturge-weber can have just a birth mark and some cases they don’t even have a birth mark. 

  • In other cases, people can suffer from epilepsy, learning difficulties and can lose usage of the opposite side of the body to the birthmark. 

  • Glaucoma can also affect people with Sturge-weber, if the birthmark covers the eye or eyelid.

  • Over time it can become worse or it can become better and more controllable. 

                              TYPES OF TREATMENT.
  
  

  • Aspirin helps and prevents blood clots.   

  • Laser treatment is available but this only fades the birthmark.                                                                                                               

  • A number of different medication and different strengths to help control the seizures.

  • If the medication doesn’t work to stop the fits and the person is suffering from them badly there is surgery to stop the fits, which is to basically kill of the side of the brain that is affected. This will stop the fits but can then lead onto learning difficulties and lose of usage on the opposite side to the birthmark.

  It would be brilliant if you could all support this good cause and contribute a small amount to a wonderful charity which aims to support families and raise awareness of a little known condition.