Ever heard of sturge weber syndrome? It's not just a birth mark!
Sturge weber syndrome is a rare disorder of unknown incidence and origin; although present at birth, it is NOT thought to be hereditary. Sturge Weber is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. Those with Sturge weber often suffer from epilepsy, weakness to one side of the body simalar to a stroke, glaucoma and learning difficulties. Symptoms usually occur in the child`s first year of life but onset can come at any time as it is a progressive disorder.
I am fundraising and raising awareness for sturge weber as my son Ashton has this condition which was diagnosed at 2 months of age, after we were told a condition could be connected to the birthmark he was born with. Initially we were worried about the birth mark, what implications this would have on his social life, bullying, stares from passers by and how school would be for him.this was the least of our worries when sturge weber was diagnosed, we were told his neurological involvement was extensive and to expect seizures. We prepared ourselves for this but they did not come until he was 2 1/2 years old, often they were vacant stares or suttle jerking movements. Anti epileptic medication was started soon after and we were referred to great ormond street as there was a specialist clinic, which was advised through the sturge weber uk support group, they picked up Ashton's glaucoma and provided a multidisciplinary care package for him. Ashton had a massive seizure last year lasting over 2 1/2 hours and another in April this year lasting about the same sort of time. It was horrible to see him like this being so helpless and unable to do anything for him, the team at Derriford are always very good throughout our stay and the support receive is great. We receive a lot of support from sturge weber uk and attend there annual family weekends where we meet others with SWS and we can share experiences and advice but they also have health care professionals come to talk and give advice, which is very useful as not many health care professionals know of the condition and how it affects individuals that have SWS. I am keen to change this and have an aim to raise funds to ensure the family weekends can continue and improve, and to help fund research into such a rare neurological condition. Donations can be made to www.justgiving.com/Ashley-Ide or by texting SWUK86 £?? To 70070 no matter how little the amount it could make a difference.
Kind regards, Ashley ide