I have a daughter we adopted at birth, along with her older full sibling. She has always had a multitude of health issues that her brother has not. At 13 she is very tall and very thin. She has long fingers and contractures of her baby fingers and rings fingers on both hands. I was thinking Dupuytren's, but then my husband pointed out her other connective tissue issues and now I'm wondering about Marfan's. She has a flat mid-face, very small lower jaw, slight cleft and very high narrow palate, extremely crooked teeth (we've been told she needs to have her jaw broken and massive orthodontia), loose joints (they pop and hurt her, mostly her heels and knees) and she just got her first pair of glasses for near-sightedness. She also has sleep apnea and has had her tonsils out twice and her adenoids removed three times now. My question is, does this sound Marfan-like? And, if so, wouldn't some sort of heart issue have surfaced during the surgeries and exams she's had in the past? Any help is appreciated.
mrbeansmom. Marfans is a high possibility. I have Ehlers-Danlos, which is another connective disorder. You might check out Sticklers Sydrome, another connective disorder. With the nearsightedness that could be an issue. It is VERY important you get a diagnosis as there are heart issues with these disorders. Vascular Ehlers-Danlos causes sudden death. Knowing what she has will ease your concern. Genetic testing is available for Vascular Ehlers-Danlos. I recommend a Geneticist at a local childrens hospital. I was 48 when I went!