Q&A: Joint and Muscle Problems in Marfan Syndrome

Dr Anne Child and Professor Rodney Grahame - Explain All

Joint and muscle problems can affect a Marfan Syndrome patient at any age. They can be managed both preventively and by choosing sports and lifestyle sensibly. Any exercise involving stretching may reduce pain. Pain relief can be provided through the family doctor or a local pain clinic. Rest, joint supports and adequate pain relief together with a sensible choice of occupation should allow the patient to enjoy a virtually normal lifestyle and look forward to many years of enjoyable life. This is especially the case now that life expectancy has been increased into the normal range, through modern medication and corrective aortic surgery.

Your Questions Answered

Q. Do connective tissue problems get worse with age?
A. In general, loose joints become firmer with age so symptoms may improve. For a small proportion of patients, however, osteoarthritis can become a problem later in life.

Q. What age do people generally start to report pain?
A. Peak periods are early childhood (knees and ankles), adolescence (back pain) and middle age (arthritis).

Q. What proportion of Marfan Syndrome sufferers end up in a wheelchair?
A. Virtually none — 1-2% in our experience.

Q. How similar is the treatment for Marfan Syndrome to Ehlers-Danlos Syndrome?
A. In skeletal symptoms exactly the same, except the tendency to joint dislocation is increased in Ehlers—Danlos syndrome and preventive joint supports are commonly recommended.

Q. I have arthritis in my thumb joints at the age of 40. Is this a common problem?
A. This can be helped with medication and joint splints which can be made by a physiotherapist and worn during stressful times such as driving the car, pulling a suitcase etc. Very occasionally an arthritic joint may need to be replaced surgically every day, in which case find an expert who does this particular surgery every week if not everyday. 

Q&A: Joint and Muscle Problems in Marfan Syndrome
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