The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
Related Resources
Vascular Ehlers-Danlos Syndrome (VEDS)
Ehlers-Danlos syndrome is a group of connective tissue disorders that are characterized by unstable, hypermobile joints, loose, “stretchy” skin, and tissue fragility. It is caused by a defect in the connective tissue. The fragile tissues and skin and unstable joints found in Ehlers-Danlos syndrome are due to a gene mutation in collagen. What other names […]
Tags: VEDS , Patients & Families
Skin in Marfan Syndrome
Stretch marks on the skin (striae atrophicae) may occur in anyone, particularly as a result of rapid growth during adolescence, pregnancy or marked weight gain or loss. People with Marfan syndrome are prone to develop stretch marks, often at an early age and without weight change. The marks tend to appear in body parts subject […]
Tags: Marfan Syndrome , Patients & Families
Mental Health Resources
While most people with chronic conditions focus on their physical health, mental health is often ignored. Having a connective tissue condition isn’t easy, so give your mind the TLC it needs.
Tags: All , Caregivers, Patients & Families
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