Posts tagged ehlers danlos

Chat 131
Notes
Posted 2 months ago
  1. Me: There's no "good" way to stand with Ehlers-Danlos.
  2. Me: Actually for that matter there's no good way to sit either.
  3. Me: Or lay down.
  4. Me: There's just no good way to exist with Ehlers-Danlos.
via bodyfallingapart
Text 63
Notes
Posted 7 months ago

bendybutnotbroken:

I got asked by my flatmate last night if EDS stood for endless dislocating syndrome. I think I may just call it that from now on.

via x---x--x
Video 8
Notes
Posted 8 months ago

ehlersdanlossupport:

a very good video about eds

anyone with eds should watch this

via ehlersdanlossupport
Link 39
Notes
Posted 8 months ago

Great paper on hypermobility

a-curious-creature:

This seems to be a great explanation of hypermobility and the related problems it can cause, by Alan G. Pocinki, MD.

I found the explanations about adrenalin and the autonomic nervous system particularly helpful because I have POTS, and cry embarrassingly easily when I’m put under a little pressure. (No, really, talking about my illness, having trouble unlocking a door, putting the money into the wrong slot at the supermarket…). It talks about all kinds of things though- headaches, sleep problems, uterine and bladder issues. If you feel like your entire body is falling apart you’re not going mad! On the other hand, he’s also sensible and reassuring that there’s no reason to think that if you have some of these symptoms your condition will escalate and you’ll get the rest. I know I haven’t got the type with serious vascular problems, for example.

Anyway, this looks really good. The author says:

“My patients have long asked for something to share with their families,
friends, and even physicians, to help educate others about their condition. I hope
this paper helps fill this need.”

via a-curious-creature
Photo 92
Notes
Posted 8 months ago
ehlersdanloszebra: EHLERS-DANLOS ZEBRA (TOP: “SEASONS BEGIN TO CHANGE” BOTTOM: “ENTIRE BODY GOES HAYWIRE”

ehlersdanloszebra:

EHLERS-DANLOS ZEBRA

(TOP: “SEASONS BEGIN TO CHANGE” BOTTOM: “ENTIRE BODY GOES HAYWIRE”

via ehlersdanloszebra
Photo 280
Notes
Posted 8 months ago
missgingerlee: It’s Invisible Illness Awareness Week.  Ginger, with multiple invisible illnesses, present & accounted for. 

missgingerlee:

It’s Invisible Illness Awareness Week. 

Ginger, with multiple invisible illnesses, present & accounted for. 

(Source: sick-girl-problems)

via duessa
Text 15
Notes
Posted 10 months ago

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.

Photo 47
Notes
Posted 10 months ago
ehlersdanloszebra: EHLERS DANLOS ZEBRA TOP:”DOCTOR: ‘YOU SHOULD EXERCISE MORE’ “ BOTTOM:”DISLOCATE KNEE WALKING HOME” Submitted by anesthesiadoll

ehlersdanloszebra:

EHLERS DANLOS ZEBRA

TOP:”DOCTOR: ‘YOU SHOULD EXERCISE MORE’ “

BOTTOM:”DISLOCATE KNEE WALKING HOME”

Submitted by anesthesiadoll

via ehlersdanloszebra
Text 29
Notes
Posted 10 months ago

ehlersdanloszebra:

via ehlersdanloszebra
Text 13
Notes
Posted 11 months ago

About Eds

ehlersdanlossupport:

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:

  • Double-jointedness

  • Easily damaged, bruised, and stretchy skin

  • Easy scarring and poor wound healing

  • Flat feet

  • Increased joint mobility, joints popping, early arthritis

  • Joint dislocation

  • Joint pain

  • Very soft and velvety skin

  • Vision problems

Treatment

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.

Expectations (prognosis)

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.
via ehlersdanlossupport