Sturge-Weber syndrome

What is Sturge-Weber syndrome?

Sturge Weber Syndrome (SWS) is a rare neurological condition and is not hereditary.

What causes Sturge-Weber syndrome?

Sturge Weber syndrome is caused by a somatic mutation in the GNAQ gene. Somatic mutation is an alteration in the DNA after conception. This mutation occurs randomly (sporadically) for no known reason. It isn’t hereditary.

What are the symptoms of Sturge-Weber syndrome?

The symptoms of Sturge Weber syndrome are

Port-wine stain (more common on the upper face and eye-lid than the rest of the body)
Seizures.
Headache.
Paralysis or weakness on one side.
Learning disabilities.
Glaucoma (very high fluid pressure in the eye)
Low thyroid (hypothyroidism)

Testing for SWS can be easy, usually the Doctor would diagnose based off visual characteristics, ie. port-wine birthmark or glaucoma, a detailed client history and specific testing.

Treatment can be varied for each patient, depending on the severity of each symptom. Laser treatment can be applied to remove or lighten the port-wine birthmark. Seizures can be treated with anti-seizure medication, or surgery.

Are you affected by Sturge-Weber syndrome?

If you’re affected by Sturge-Weber syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Sturge-Weber syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with Sturge-Weber syndrome from all over the UK from our centre in Liverpool.

Looking to talk to someone?

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Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0800 008 6417

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Caring for someone affected by Sturge-Weber syndrome

It can be very scary to have a loved one suffer with seizures and the symptoms that come along with SWS. Joining support groups will make you feel less alone as others are going through similar experiences. It will help to speak to others and make new friends within the community.

Keeping a diary of symptoms will be helpful for the specialists as you have accurate data to show the frequency and severity of symptoms which will allow the specialist to fully understand your loved one’s condition.

Make sure you look after yourself as much as you look after them. If you need any assistance, or just need a friendly chat, we have lovely counsellors who can take your call.

We support carers, friends and family too

Are you a carer for or relative of someone with Sturge-Weber syndrome? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Sturge-Weber syndrome, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at The Brain Charity has a range of resources on Sturge Weber syndrome and on a wide range of disability-related issues.

Support groups

Sturge Weber UK

www.sturgeweber.org.uk/membership/

You can join as a member and have full access to their services. Membership is free.

Other charities

Sturge Weber UK

www.sturgeweber.org.uk

Tel: 01422 820408

Address: Milk Hall
Withens Lane
Barkisland
Halifax
HX4 0DY

Contact, a charity for people with disabled children.

Freephone helpline: 0808 808 3555
Website: www.contact.org.uk
Email: helpline@contact.org.uk