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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Questions about Marfan's

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Questions about Marfan's › Reply To: Questions about Marfan's

June 2, 2012 at 6:25 pm #2320
Barbara
Participant

Does anyone know if a child of a EDS type 3 could have Marfan’s, or would it be more likely the child “just” has a Marfan’s appearance and is also a type 3?

It has recently become obvious to me that my 17 y.o. son is looking more and more like he has Marfan’s (and none of my other children have this look, even though several have the signs/symptoms of EDS). He is 6’2 and his arm span is 6’4.5. He is very thin with a short torso and long legs, arms, feet and fingers. His chest has that caved in sternum look and his ribs poke out quite a bit. He is hyperflexible, has the widening scars and slow/poor wound healing. He has had one finger dislocation. Blue sclera. The list goes on and on. But the main difference between he and my other EDS kids is the arm span being longer than his height.

Is it typical that the only way they DX Marfan’s if there is no family history of it, to do an ECHO and if they find a problem then it is Marfan’s and if they don’t find a problem then it isn’t Marfan’s?

Thanks for any info you all can share with me!

Hi,
I am curious about this too, I am EDS lll, only 5’3″ tall(now!) with short body, long arms and long legs, my girls are a little taller but more or less how I was at their age (average build) and both have signs of hypermobility. My son however is 6’3″, tall and thin with long arms and legs and has a few problems that made me wonder whether he was Marfan or not.
Regards
Barbara
(UK)

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