Marfan’s syndrome
Shows children and teens who have Marfan syndrome. (Photos generously provided by Rick Guidotti/Positive Exposure and Timothy D. Joyce)
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Source: http://youtu.be/fZLXtLObWO0
Marfan syndrome is a genetic (inherited) condition that affects the body's connective tissues. Connective tissues provide support and structure to other tissue and organs.
The symptoms of Marfan syndrome vary from person to person, as the condition can affect the connective tissues in different areas of the body. For example, it can affect:
SEaTSS can support students with this condition.
To refer to SEATSS please use this link:
https://eforms.redbridge.gov.uk/single-point-of-access-referral-form-for-education-support/
Shows children and teens who have Marfan syndrome. (Photos generously provided by Rick Guidotti/Positive Exposure and Timothy D. Joyce)
A woman with Marfan Syndrome who has hypermobile joints.
PSA featuring Anthony Rapp, star of the original Broadway and film productions of RENT. RENT creator, Jonathan Larson, died of an aortic dissection, thought to have been caused by Marfan …
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TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…
Shows children and teens who have Marfan syndrome. (Photos generously provided by Rick Guidotti/Positive Exposure and Timothy D. Joyce)
Full Size image
Source: http://youtu.be/fZLXtLObWO0
http://www.marfan.org/marfan/2728/Physical-Activity-Guidelines
Here you can download a set of guidelines for Physical activity
Marfan syndrome is relatively rare. Approximately 1 in 5,000 people have the syndrome. Men and women are equally affected. Although rare, Marfan syndrome is the most common connective tissue disorder.
In around three-quarters of cases, Marfan syndrome is inherited from one of the parents. However, in a quarter of cases, neither parent has the condition.
http://www.marfan.org/marfan/2728/Physical-Activity-Guidelines
Here you can download a set of guidelines for Physical activity
Teens with Marfan syndrome who are nearsighted will probably have to wear glasses or contact lenses. If the lens of the eye becomes severely dislocated or if there are other complications, surgery may be necessary to fix eye problems.
Teens who develop scoliosis may have to wear a special back brace. Sometimes severe cases of scoliosis and chest wall problems may require surgery. Some people may also choose to have surgery for cosmetic reasons.
Teen girls with Marfan syndrome also need to be aware that pregnancy puts extra strain on the heart and may increase the risk of damage to the aorta. Teen girls with Marfan syndrome who are pregnant should talk to their doctor immediately.
The most important is to avoid putting extra stress on the heart. That means avoiding any sport where there's a lot of running, physical contact, muscle straining, or the chance of getting hit in the chest — things like basketball, football, baseball, gymnastics, weightlifting, and track.
Marfan syndrome can affect many parts of the body. The main parts of the body that are affected by Marfan syndrome are the:
The symptoms of Marfan syndrome can vary in severity between people. Approximately 1 in 10 people with Marfan syndrome are severely affected. The symptoms tend to worsen as you get older.
People with Marfan syndrome tend to have several physical characteristics, including:
A great 4 page fact sheet summarising key facts and where to go for help and support.
A UK wide charity providing advice, information and support to parents of all disabled children.
A great link to a collection of opportunities for supportive holidays, grants and adapted accomodation.
This link has a range of different opportunites listed and who is eligable to apply.
Using this link will save you hours surfing the net.
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