What is Ehlers-Danlos Syndrome

First of all, what is EDS? Wikipedia has an excellent page about it, but I'll put it simply. It is a joint and tissue connectivity disorder. It is also a chronic pain disorder. It affects joints, muscles, tissue and even the organs of the body. Some symptoms and characteristics are extreme flexibility, loose joints that often dislocate, easy bruising, velvety and stretchy skin as well as early onset osteo-arthritis as well as other symptoms.

My personal EDS. I have EDS type 3. EDS is hereditary. As the EDS gene is passed from one generation to the next only 50% of the genes pass to the child and the other 50% mutate. This means no ones case is the same making it extremely difficult to study. As a result, there is no treatment and no cure. Depending on the genes mutation the threat of EDS can range from mild to life threatening. I was diagnosed with type 3, the most mild, after one physical examination. However, a second exam called for reevaluation of a more severe form. I have not yet done that test as it is an excruciating bone marrow biopsy. I said, "If I have it, i have it! Taking a test won't change it! And there's no cure so. . . I think I'll have a happier life if i don't experience the bone marrow biopsy."

So, back to my personal EDS. I have early onset osteo-arthritis in my hips and lower back, I have extreme flexibility and am at risk for Mitral Valve Prolapse. When I had my physical exam done my Rheumatologist bent my fingers backward to almost a 90 degree angle and said, "Yep, you have EDS alright." I said, "They can go back a lot further than that!" (My fingers can rest backward on the back of my wrist). And she said, "You only have to be able to pull them back this far (90 degrees) to be for considered EDS." I have the stretchy skin which is a plus believe it or not--no stretch marks after gaining 55 lbs in my first pregnancy. Woo hoo!!

Everyone is different. My mother has EDS 3 as well, but our aches and pains are totally different. For example, she doesn't dislocate her joints often, but I consider it a good day if I can keep my dislocations below 5!

All of this with a two year old. I have a very busy two year old boy who gave up naps recently. he is always on the go! How do I run after a two year old when I have osteoarthritis? I don't know. Lots of blessings I guess. But, I do it day in and day out. And I hope to share some of my tips and ideas with you and ensure a happy motherhood. These ideas will also help your child have a happy childhood even though you can't army crawl with them on the floor because you might get stuck, even though you can't swing them around in circles by their arms because your own arms might dislocate.

So join me as I record my experience of motherhood with EDS. Together we'll do the best we can. Let's put our ideas together and ensure a happy life for all amidst the constant pain. Let's work together!