The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.
|Signs and Symptoms||Approximate number of patients (when available)|
|Attention deficit hyperactivity disorder||50%|
|Abnormality of the retinal vasculature||7.5%|
|Cerebral cortical atrophy||7.5%|
|Feeding difficulties in infancy||7.5%|
|Neurological speech impairment||7.5%|
Life expectancy varies for each individual affected by Sturge-Weber syndrome. Most cases are fairly mild and not life-threatening. In these cases, life expectancy is thought to be normal. The patient's quality of life depends on how well the symptoms (such as seizures) can be prevented or treated.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
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I have a son who is 18 months old. He has Sturge-Weber and we are wondering what the percentage is that his birthmark will protrude from his face. What are the pros and cons of laser surgery? If we were to get the surgery, when would be the best time to get it done? See answer
What is the life expectancy of an adult with Sturge-Weber syndrome? See answer
How does Sturge-Weber syndrome affect adults? I'm a 43-year-old person who has this disorder and had my birthmark removed at age 4. See answer