Ehlers-Danlos Syndrome

I would almost rather have a condition that others have actually heard of. Screening doctors to ask if they have ever heard of this condition, explaining to family what it is and getting strange looks from them, having friends and family think I'm bordering on hypochondria because I am coming home with diagnoses that are unusual or unheard of in this small town.
A lot of people look at me as a klutz, because I can pop out joints without warning. They think I'm accident prone, or looking for attention, not thinking that anyone can dislocate as often as I do.
I have the hypermobility form of Ehlers-Danlos Syndrome with more extreme features consistent with the classical form. I scored a 9/9 on the test for hypermobility, however, I also have wide scarring frm previous surgeries, piezogenic papules, straiae on my abdomen and flank. I have a hard time healing from even a cat scratch. It scars terribly. I bruise way too easily. When going in one day to the emergency room for the flu, a nurse saw my bruising and called social services in to ask me about my home life!
I have had both of my knees rebuilt with tendon transplants in both. What was supposed to take 8-12 weeks to heal, took me 2 years. My scars are long, wide, still dark, and ugly. I don't think that will ever change. I wish it would!
The thing is, though, family and friends think that I am just extremely double-jointed, and nothing is wrong further than that. I can't just lift my shirt and show them what has happened to my skin, and I don't normally show off my legs at all for them to see the results of that surgery. My husband knows, but this "invisible disease" seems to be an ongoing battle to convince those around that something is wrong more than being accident-prone or double-jointed. I have 4 children, so if I am having any pain, that is where they figure that is where it must be coming from... that and trying to work two jobs. As of today, I just quit one of them. I couldn't keep it going. I'm sure I'll hear something about that. Oh well!
Ehlers-Danlos has also caused mitral valve prolapse. I have to go to the University of Iowa today to have an aortic root measurement done. I have to take my 3year old with me. Won't that be fun? I don't have a sitter. I have to see my geneticist, my cardiologist, and the pain specialists today. Three appointments rolled into one fun filled day of a grumpy three year old. The trip to there and back is a 300 mile round trip. Like I said.... grumpy three year old....
My kids are all showing signs of hypermobility as well. My ten year old daughter can dislocate her shoulders at will. She hasn't had gymnastics training, and yet has always just been able to do the splits. She can lay her thumbs on her arms when bending them forwards AND backwards...and now she is having what the local doctor is calling "growing pains". I think it is something more.
Thanks for taking the time to read this! Have a great day!