Musculoskeletal Challenges in Marfan Syndrome and the Role of Physical Therapy

Dr. Ryan Goodwin, Director, Cleveland Clinic Center for Pediatric Orthopaedics and Scoliosis Surgery is joined by physical therapists Raquel Griffis, PT, DPT and Lisa Seely, PT to discuss the changes that occur to the musculoskeletal system with Marfan Syndrome, treatment options, when to seek a physical therapist (PT), how to work with a PT, and a case presentation of a child with Marfan. Filmed at the Regional Symposium on Marfan Syndrome and Related Disorders presented by Cleveland Clinic and The Marfan Foundation

[@MissouriBirds]

As a 39 yr old with Marfans, ligamentous laxity, and osteoarthritis since my early 30s--I beg to differ that "the vast majority of these issues cause no arthritis." I believe if you were to take xray imaging of these people's hands, feet and smaller joints you would definitely start seeing joint changes there in fairly early life. The changes are subtle--but they can cause pain. Hyperextensibility of joints DEFINITELY wears down the joints a lot faster is my point.

[@MH-hw4uh]

You are absolutely right. My major problem is muscular skeletal and I have severe scoliosis, and hip dysplasia, which leads to arthritis, osteoarthritis, degeneration of the bones in spine and hips and the list goes on. Many family members also.

[@Sadzi7]

When you first time diagnosed with it? when did the symptoms reveal?

[@MissouriBirds]

@@Sadzi7my family and I were well aware of the joint laxity and hyper-extensibility issues pretty much from the time I can remember-maybe age 5 or so? Severe joint pain for me didn’t start until age 30 or so though…and started in the wrists and hands/fingers/thumbs at first.

[@MissouriBirds]

@@Sadzi7also..forgot about my neck. Apparently the hypermobility really affected my neck and likely from the little bit of sports I played. I’ve never been in a car accident or had any real trauma or my head or neck, but my X-rays from age 30 looked worse than what most 90 year olds. No joke.

[@Sadzi7]

@@MissouriBirds Thank you for your quick response to the question, I really appreciate it. 🌹🌹🌹
With all my heart, I wish you a long and happy life.🙏

[@muhammadzakwan2550]

Tolong doakan saya sembuh dri penyakit scoliosis. Dan marfan sydrome(walaupon dr ckp sy tidak ad marfan sydrome) tpi kehidupan saya seperti seorng marfan sydrome. Hanya perlukan doa korang sahaja🙏🙏

[@DeeplyGratified]

I have Marfan's and just going grocery shopping puts me in bed for a day, so my body can recover from all that moving. Just grocery shopping causes my back to lock up, and I don't how else to explain it, but my muscles flare up and all I can do is stay off my feet.
So, no physical therapy is not going to work for everyone

[@MH-hw4uh]

You are absolutely, correct. At 66 I have been there done that. Physical therapy makes it worst. Any form of movement hurts. Any task hurts and becomes painful and bedridden until it wears off.

[@YankeeTM]

Good day ,
I have knee pain sometime. It's really weird . Any exercise or something to that? . Yeah I'm a marfan. Knee pain feels like it's gonna collapse and I'll break my knee sometimes

[@milespennington5255]

Go to PT they help so much.

[@beatrizmelendez4709]

@@milespennington5255 Do you know if eye pain or headaches are symptoms of marfans?

[@milespennington5255]

@@beatrizmelendez4709 not sure

[@milespennington5255]

@@beatrizmelendez4709 talk to a doctor if you think if you have marfans.

[@hugedisappointment309]

Yankee TM same

[@warai309]

Whats with the eyes?

[@davidmm93]

Google it

[@MissouriBirds]

Oh I see you're in pediatrics. well if you worked in adult med--you would know for sure that joint laxity causes really bad arthritis eventually.

[@MH-hw4uh]

Absolutely. The older you get the worse everything that ails you gets.