Redbridge SERC

Marfan Syndrome

Description

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:

  • blood vessels, causing damage to the heart
  • skeleton, causing long, thin limbs
  • eyes, causing the lens (the transparent structure at the front of the eye) to fall into an abnormal position (lens dislocation) 

Fact sheets

Training / Help

Further help and support can be obtained from:

  • School nurse
  • Medical team that support the student at hospital eg cardiologist, orthopaedic team
  • Joseph Clark Outreach Service

Videos

Screenshot for video: Hypermobility & Marfan Syndrome

Hypermobility & Marfan Syndrome

A woman with Marfan Syndrome who has hypermobile joints.

Screenshot for video: A selection of photo’s of children and teens who have Marfan Syndrome

A selection of photo’s of children and teens who have Marfan Syndrome

Shows children and teens who have Marfan syndrome. (Photos generously provided by Rick Guidotti/Positive Exposure and Timothy D. Joyce)

Screenshot for video: Personal view of Marfan Syndrome

Personal view of Marfan Syndrome

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 …

Learning Aids

Please offer me a seat badge

Please offer me a seat badge

Available from:

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…

Illustrations

Marfan’s syndrome

Marfan’s syndrome

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

Frequently Asked Questions

  • Can students with Marfan Syndrome do PE and exercise?

    http://www.marfan.org/marfan/2728/Physical-Activity-Guidelines

    Here you can download a set of guidelines for Physical activity

  • How many people have Marfan Syndrome?

    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. 

  • Are there any complications for students who have Marfan Syndrome ?
    • EYE SIGHT

    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.

     

    • SCOLIOSIS

    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.

     

    • PREGNANCY

    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.

     

    • HEART

    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. 

  • Can students with Marfan Syndrome do PE and exercise?

    http://www.marfan.org/marfan/2728/Physical-Activity-Guidelines

    Here you can download a set of guidelines for Physical activity

  • What are the physical characteristics of students who have Marfan Syndrome?

    Marfan syndrome can affect many parts of the body. The main parts of the body that are affected by Marfan syndrome are the:

    • skeleton
    • eyes
    • cardiovascular system (the heart and blood vessels)

    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:

    • being tall
    • being slim
    • having long, thin arms and legs
    • having loose and very flexible joints 

Family Resources

Marfan Association

Website: 
http://www.marfan-association.org.uk/sitebuildercontent/sitebuilderfiles/fact_sheet_2008.pdf
Description

A great 4 page fact sheet summarising key facts and where to go for help and support.

Contact a family

Website: 
http://www.cafamily.org.uk/
Description

A UK wide charity providing advice, information and support to parents of all disabled children. 

A collection of different holidays for children who have a physical/ learning disability or medical

Website: 
http://www.disability-grants.org/holiday-grants-disabled-children.html
Description

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.