Ehlers-Danlos Syndrome - Share Your Experience

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Do you or a relative have Ehlers-Danlos syndrome (hypermobility)? Please share your experience.

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What are the types of Ehlers-Danlos syndromes?

Classical type
(formerly types I & II)

Marked joint hypermobility, skin hyperextensibility (laxity), and fragility are characteristic of the classic type of Ehlers-Danlos syndrome. The smooth, velvety skin is fragile and tears or bruises easily with minor trauma. Joint dislocations and scoliosis are common. Joint instability can lead to sprains and strains. This classical type is inherited as an autosomal dominant genetic trait (directly passed on from one parent to child).

Hypermobility type
(formerly type III)

Joint hypermobility is the major manifestation of this form of Ehlers-Danlos syndrome. Any joint can be affected, and dislocations are frequent. This type is also inherited as an autosomal dominant genetic trait.

Vascular type
(formerly type IV, the arterial form)

In this form of Ehlers-Danlos syndrome, spontaneous rupture of arteries and bowel is a serious manifestation that can lead to death. Clubfoot can be present at birth. Skin laxity is of varying degrees. Veins can be very visible through the skin. It is primarily inherited as an autosomal dominant (directly passed on from one parent to child) genetic trait, but recessive (not seen in family members or only in one generation of members of the same family, meaning that an individual must inherit two copies of the mutation, one from each parent) trait inheritance has been described.

Kyphoscoliosis type
(formerly type VI)

Fragile globe of the eyes, significant skin and joint laxity, and severe curvature of the spine (scoliosis) are typical features. Its inheritance pattern is autosomal recessive.

Arthrochalsia type
(formerly type VIIB, arthrochalasis multiplex congenita)

Patients are short in height and severely affected by joint laxity and dislocations. Skin involvement is variable. Both utosomal dominant and recessive inheritance is possible. A skin biopsy can be used to diagnose this disorder.

Dermatosparaxis type
(formerly type VIIC)

Patients have severely fragile skin that is soft and doughy with sagging and folding. This rare form of Ehlers-Danlos syndrome can be diagnosed with a skin biopsy.

Tenascin-X deficient type

Joint hypermobility, hyperelastic skin, and fragile tissue are seen. Patients with this type lack the multiple shrinking (atrophied) scars in the skin that are often seen in classic Ehlers-Danlos. It is inherited as an autosomal recessive genetic trait.

Other rare variant types have been reported in single families.

Return to Ehlers-Danlos Syndrome

See what others are saying

Comment from: MomWithEDS, 25-34 Female (Patient) Published: November 18

I am a 32 year old mother of two who was diagnosed by with Ehlers-Danlos syndrome (EDS) in May 2013. As a child and teenager it was always thought that I was just very flexible and double-jointed. A few years ago my hips started popping out without warning, and it was extremely painful. After visiting a local orthopedist, she suspected that EDS Hypermobility Type 3 may be my issue. She referred me to another doctor for an official work-up and diagnosis. He was certain I had EDS within minutes of starting the exam. Currently I am doing physical therapy to strengthen my core (hopefully to make my muscles be able to make my joints more stable), but I haven't had any improvement so far that I can tell. Medication wise I take an extended release medicine (Oxycontin) three times a day, along with an anti-inflammatory and another pain medicine (oxycodone IR) for breakthrough pain. This is not the life I had imagined I'd have, but I try to stay positive in the face of pain and accept my situation without letting it own me.

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Comment from: Teacher5, 55-64 Female (Patient) Published: May 13

When I was a crawling toddler, my legs would bruise very easily. My mom suspected something was different between me and my siblings so she pushed for a diagnosis - Ehlers-Danlos syndrome (EDS). Oddly, my father had some of my same issues, but he never paid it any mind. Whenever we went on vacation, I would end up with stitches or a huge lump wherever I had bumped myself. My skin stretches incredibly, but it"s never been a problem. I have had more cavities than any of my siblings despite trying to take good care of my teeth. My 2 sons have also had their share of stitches. Also, when they each turned 18, even though neither had had any cavities that could be seen by their pediatric dentist, their new dentist diagnosed them with deep cavities, necessitating root canals. Then, their pediatric dentist did a lot of research and called to ask if they had EDS. I was shocked, to say the least. Watch your teeth!

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