- Me: There's no "good" way to stand with Ehlers-Danlos.
- Me: Actually for that matter there's no good way to sit either.
- Me: Or lay down.
- Me: There's just no good way to exist with Ehlers-Danlos.
I’m disabled. I have Ehlers Danlos Syndrome, and am on disability because of it. I know that some people with Ehlers Danlos Syndrome are also disabled and have trouble getting on disability, partially because EDS is so unheard of and partially because EDS often presents in a milder form that does not affect a person’s lifestyle to the point that they can’t work or perform everyday tasks.
I wanted to offer some advice to those that are or want to apply for disability, because I see a lot of people having trouble with it.
1. Get your doctor to write a letter explaining that you are disabled and cannot work. A lot of people just straight up apply, but from what I understand, a doctor’s note helps.
2. You will very likely be turned down the first time you apply. Appeal. You’ll probably be turned down again. Appeal. Remember, they want you to give up.
3. Do not let your appeal period expire.
4. You will probably need to hire a lawyer and have a judge look over your case. If your case is anything like mine, the judge will be confused that your case had to be taken so far, and approve you right away. The hearing was by far the least upsetting part of the entire ordeal.
5. Applying for disability can be incredibly stressful, but remember that approval is possible. It will probably take a long time, but don’t give up.
6. Remember to take care of yourself.
Ehlers-Danlos syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels.
There are six major types and at least five minor types of Ehlers-Danlos syndrome (EDS).
A variety of gene mutations (changes) cause problems with collagen, the material that provides strength and structure to skin, bone, blood vessels, and internal organs.
The abnormal collagen leads to the symptoms associated with EDS. In some forms of the condition this can include rupture of internal organs or abnormal heart valves.
Family history is a risk factor in some cases
Symptoms of EDS include:
Easily damaged, bruised, and stretchy skin
Easy scarring and poor wound healing
Increased joint mobility, joints popping, early arthritis
Very soft and velvety skin
- Vision problems
There is no specific cure for Ehlers-Danlos syndrome. Individual problems and symptoms are evaluated and cared for appropriately. Frequently, physical therapy or evaluation by a doctor specializing in rehabilitation medicine is needed.
People with EDS generally have a normal life span. Intelligence is normal.Those with the rare vascular type of EDS are at significantly increased risk for rupture of a major organ or blood vessel.