Everyone (which includes children and young people) benefits from exercise
Regular exercise improves both physical and emotional well-being. It can be incorporated safely into the routine of children and young people with Marfan syndrome and related disorders. With early diagnosis, treatment, and lifestyle adaptations, many people with Marfan syndrome can now expect to live a normal lifespan.
This information is for those with Marfan syndrome and related disorders. However, individuals may have unique disease-specific issues that require personalised consideration and restrictions. For example, those with Marfan syndrome may have joint instability, which impacts on certain exercise and physical activity. Please talk to your Doctor or Nurse Specialist in clinic about your child’s individual condition.
The general guidelines for people with Marfan syndrome and related disorders is to avoid competitive and contact sports. This is because these sports would put added stress on the aorta, cause chest or eye trauma, or be potentially damaging to loose ligaments and joints.
There are different types of exercise and activity, which may need modifying depending on your child’s age and interest. This table is a useful baseline to start with (taken from the Marfan Trust) as it considers the different parts of the body that can be affected.
Age-related activity advice
There are various stages in your child’s life that you may consider especially important in terms of exercise & activity. Often there is particular concern as they move into their teenage years when exercise becomes more “formal” and “competitive”.
Pre-school (up to 5 years)
Children generally enjoy being active and should be encouraged. Restrictions are not necessary and family activities should be part of daily life.
School age children (up to 12 years of age)
Children should get involved in PE lessons and activities at school. Discuss restrictions (if any) with the school teachers. Ask for a letter from your Doctor or Nurse Specialist if further information is required.
Young people aged 12-16 years
P.E and out of school activities become more competitive between peers. There may be times when your child will need to adapt what they get involved in, or even consider a different activity. Please refer to the above table for clarification about what they may need to avoid, to prevent injury.
Where can I get further help?
If you require help or advice about any heart issues relating to your child’s condition, then please contact the Specialist Physiotherapist Sarah Hibbert, who works closely with the cardiac team.
Her email address is: [email protected]
The Cardiac Nurse Specialists based at Leeds General Infirmary, are also available for support and advice.
Tel: 0113 392 5467 Email: [email protected]
For advice relating to other aspects of your child’s condition please refer to your paediatrician at the local hospital you are based.
National & International Support Groups
www.marfans.org
An international group that provides medical information and support for parents and young people. They run virtual support groups regularly.
www.marfantrust.org
A UK based group for people with Marfan Syndrome and Loeys-Dietz, which provides further information about the conditions and related issues such as genetics and living with your condition.
Loeys-Dietz Syndrome Foundation (www.loeysdietz.org)
An international group that provides medical information and support for parents and young people with Loeys-Dietz
