(from EDS National Foundation site)

What is EDS?
Individuals with EDS have a defect in their connective tissue, the tissue that 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.

What are the symptoms of EDS?
Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis.

Skin: soft velvetâ-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
What are the types of EDS?
There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that "runs true" in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS. Learn more about the different types of EDS.
How is EDS diagnosed?

The categorization of the Ehlers-Danlos syndromes began in the late 1960's and was formalized in the Berlin nosology. Over time, it became apparent that the diagnostic criteria established and published in 1988 did not discriminate adequately between the different types of the Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other phenotypically related conditions. Learn more about the EDS nosology and how EDS is diagnosed.
How prevalent is EDS?
At this time, research statistics of EDS show the prevalence as 1 in 5,000. It is known to affect both males and females of all racial and ethnic backgrounds.
How is EDS inherited?
The two known inheritance patterns for EDS include autosomal dominant and autosomal recessive. Specifics regarding genetic inheritance may be found by following the link below. Regardless of the inheritance pattern, we have no choice in which genes we pass on to our children. Read more about hereditary patterns.
What is the prognosis of someone with EDS?
The prognosis of EDS depends on the specific type. Life expectancy can be shortened with the Vascular Type of EDS due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.
What can I do now?
The defining trait of those affected by EDS is the search for information. The rise in Internet usage in the last few years has delivered a significant benefit to families affected by EDS. EDNF members are sharing information on-line and learning from each other in ways that were impossible a decade ago. Learn more about the benefits of EDNF membership.

EDS

Ehlers-Danlos Syndrome

• Ehlers-Danlos (pronounced A-lerz-DAN-los) Syndrome, an inherited disease, is a defect in the connective tissue that supports many body parts, including muscles, tendons, ligaments and skin.

• The fibrous protein collagen is faulty, causing connective tissue to not be elastic or strong. Collagen acts as glue in the body, adding strength and elasticity to connective tissue.

• There are six major types of Ehlers-Danlos and symptoms depend on the type. Symptoms include loose, unstable joints and skin that bruises or tears easily.

• The syndrome may be diagnosed with a skin biopsy, a physical exam and a review of family and medical history.

• There is no cure. Treatment options vary and include joint protection, surgery to correct fractures or dislocated joints, pain management and having a strong support network.

• Sources don’t agree on the prevalence of the uncommon syndrome.

• People with Ehlers-Danlos generally have a normal life span. The syndrome does not affect intelligence but physical activity often is restricted.

SOURCES: The Arthritis Foundation, Ehlers-Danlos National Foundation, Mayo Clinic, Healthline

slight improvement

in the overall pains, but still a lot of shoulder wonkiness as well as neck stuff. Sunday was slightly rough but that was b/c of the crap weather. Haven't been to the pool since last week, may try later but had PT this am so will see how I'm feeling. We worked a lot on shoulder and neck stuff, tomorrow we're going to do more core work. Tomorrow was the last appt I had booked, but the PT said to book the next two weeks, twice each, and then we'll see if I can go down to once. After that she'll have a routine for me and I can hopefully just do it myself at home.
I can't wait for it to start warming up so I can at least do more walking. I feel so inactive.

and the next thing to fall apart is...(drumroll please)

...my right shoulder. Well, it's been crap for years, and I had done some PT with it whilst doing my hip PT pre-surgery, mostly b/c I needed it to use the crutches for when I had my hip done. After surgery we forgot about it though. And now it's back, with a vengeance.

Last Wednesday at PT it subluxated when I was finished with one of the core exercises. I told the PT lady about that and then just ignored it. This past weekend I was out with some friends and I just moved slightly, not even my arm, just my upper body, and my right shoulder went CRACK! My friend sitting across the table from me heard it. I didn't realise how loud it was! It's not been very happy but it never is. Anyway, at PT last night I was telling the PT lady about what happened over the weekend and she wanted to take a look. She had me do an exercise and felt my right shoulder, and then the left. The left is okay, comparatively speaking, but she was amazed at how unstable the right shoulder was. Now I have been told I cannot swim with my arms, only use a kick board, until I strengthen and stabilise the shoulder joint. I'm telling you I am just so tired and over all of this constant battling, and it's never going to get better. I'm wiped out. Mentally, emotionally and physically. The one exercise I could still do and now I can't even do that! I was given (well more like made to purchase b/c insurance co's don't cover anything) a theraband and the PT gave me three exercises to start with. I really hope it doesn't take too long to stabilise it. UGH!

miserable day

I feel like crap. Yesterday I started getting v. crampy - that time of the month - and I just wanted to curl up somewhere comfy. But no, I had PT after work. It was okay for the most part, other than my right shoulder subluxating when I was done doing some core work lying on a foam tube. The things these people come up with! Anyway, I started to spasm a bit on my walk home, so used more heat when I arrived. I was knackered and though I slept well but when I woke up this morning, everything started to hurt. Cramps again, then whole body ache (must be the low pressure, I feel like I've got a vice on my whole body), then headache, then the never-ending jaw ache, then my back and now my neck. I really should have just stayed in today. I didn't go make it to the pool on Tuesday because of transport issues, though I did go last Friday and Sunday, so I really am hoping to go tonight, but I think I'll have to wait and see. The wind is so strong out there it takes at least twice the effort to walk and now my hip is not happy either.
Yes it's a whinging day but trust me, if you ever felt like this, and I hope to G-d you never do, you'd be happy to indulge me this time.