The disease is fairly rare and affect 1 out of 5,000 although these facts can be debated. Most types of Ehlers Danlos Syndrome are not fatal, however there is still a high risk of the individual unintentionally injuring themselves because the joints are lax and easily dislocated. Chronic pain can be a problem with this disease. Chronic dislocations and subluxations cause friction between bones which in turn creates inflammation and pain. Pain can be managed with an array of medications. To have a better understanding of how EDS affects the body, variations of the types are listed below:
Characterized by joint hypermobility, skin laxity, tears, bruising and fragility. The skin be stretched beyond that of an unaffected person. Also has a velvety feel to it and can be easily bruised and/or torn. Scoliosis is also common with this type of EDS. Is an autosomal dominant genetic trait.
Characterized by severly lax joints, chronic dislocations, subluxations, and lax skin. Is an inherited autosomal dominant genetics trait.
Vascular EDS (Arterial Form)
Characterized by weak collegen bonds in the vascular system and in the organs such as the bowel and stomach. Also at birth, club foot, and hip dislocations can be presented. Veins are visbile through the skin This type of EDS can be life threating due to the fact that if a bowel or an artery ruptures, it can cause internal bleeding, sepsis and if untreated, death. There can also be minor to severe joint laxity and complications. Is an autosonal dominant genetic trait.
Characterized by fragile globes in the eyes, skin and joint laxity, and severe scoliosis, also known as a curvature of the spine. Is an autosomal recessive trait.
Patients with this type of EDS are often short in stature, and are severely affected by joint and skin laxity. A skin biopsy can help determine diagnosis. Is both autosomal recessive and dominant genetic trait.
Characterized by severe skin laxity, sagging, stretching, and folding.
Some other conditions that are associated with EDS are Fibromyalgia, Celiac Disease, Migraines, Circulation and Temperature problems, and Postural orthostatic tachycardia syndrome, also known as POTS.
We are not freaks, or any different than the "normal" person. We are just more flexible, fragile, and in pain all the time. At lastly, EDS does not stand for Erectile Dysfunction Syndrome. :p
I am trying to put together a fund raiser of some type for EDS Awareness and Research. I will update when I have put something together.