Ehlers-Danlos Syndrome

The Basic Medical Facts:

Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Ehlers–Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility.There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.Each type of EDS is a distinct disorder that "runs true"in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS. Source

So what does it mean to have it then?

For most people EDS means pain and frustration and fatigue. Some are born showing symptoms. For many symptoms show up around or after puberty. Still others don't know they have it until they have a family member diagnosed. Within the types of EDS there is a spectrum of how it affects the person, both in severity and the laundry list of areas affected. Vascular Type EDS is always serious because it is life-threatening. Classical or Hypermobile Types on the other hand can range from few problems and not much discomfort, to the debilitating pain that can be a part of the Hypermobile Type. Many people with EDS have gone through several doctors before finding out that they weren't out of their heads, that they do have something actually wrong with them. Thus, the process to diagnosis can be very aggravating, especially when there aren't many doctors out in the medical world period who have seen it and diagnosed it correctly. Often times the patient knows more than the doctor who finally diagnoses them just from living with its daily problems.

Daily life management is where the fun really gets started. It's amazing how can EDS affect literally every aspect of life: marriage and dating, having and raising kids, going to school, what to eat, a job, what kind of clothes or shoes to buy, the works. This is a result of the multiple other problems a break-down in connective tissue can cause. Instability of ankles and can lead to bad lower back pain and nix a cute pair of dress heels for good. Constant pain means more fatigue and fewer activities. Sports become a major no-no because of a huge hike in the injury possibility department. The appearance of major bruising might mean shorts aren't such a good idea after all. Taking tests in school can become a nightmare to keep up. EDS does affect everyone differently, but in the end there are always sacrifices to be made.

Types of EDS:

Classical Type (Types I & II combined)
Hypermobile Type (Formerly Type III)
Vascular Type (Formerly Type IV) *life threatening
Kyphoscoliosis (Formerly EDS Type VI)
Arthrochalasia (Formally EDS Type VII A&B)
Dermatosparaxis (Formally EDS Type VIIC)

Links for EDS