May is Ehlers-Danlos Awareness Month

May is Ehlers-Danlos Awareness Month...

EDS is a rare connective tissue disorder affecting about 1 in 20,000. EDS affects connective tissue, which are tissues that support the skin, bones, blood vessels, and other organs. There are 6 subtypes that vary in severity from mild to life threatening. An unusually large range of joint movement (hypermobility) occurs with most forms, as well as some form of skin involvement. The loose (hypermobile) joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. EDS causes fragile blood vessels and organs that can lead to ruptures and can also effect the heart. EDS has no cure or specialized treatment.

This is a great resource for information: http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

*Please do not use this as medical advice or self-diagnose. Please see you primary care physician or genetic specialist if you think you have EDS.


I have been aware of this disorder for a couple of years because of my bestie, Jessica Anderson, because she has EDS Type-3 Hypermobility type and mixed connective tissue disorder. I have gotten to know the terms, problems and have seen her go through some very difficult times. I have also been able to meet some incredible hipchicks that are also effected by this disorder, such as Jill Murphy. Most recently, Jill has been educating me, as well as others, and advocating for EDS education and awareness.

The more that I learned about this disorder I realized how much it related to me. I did some digging around and found out some more about my medical history, researched a lot of EDS and spoke to a couple of my docs. I have no family history of hip dysplasia, but did read that EDS patients are more susceptible to bone deformities and problems, which definitely made sense in my case. One symptom had always stood out to me was my skin problems. My wounds would take weeks to heal, they would tear open and form abnormal scars. I asked my OS, Dr. Millis, how likely it was that I have EDS and he wanted me to go see a geneticist because it was very fitting. I just had my appointment with the geneticist this past Friday and he confirmed that I no doubt had EDS Type 1 (moderate)-Classical type. Classical type has a lot more skin involvement that includes very stretchy skin, soft and velvety to the touch, poor and abnormal wound healing and abnormal scarring, as well as, some joint involvement, etc. It occurs in 2-5 out of 100,000 people. WOW! I was expecting the diagnosis, but there was things the doctor had explained that will effect the future and how I do things that I had not necessarily thought of. The diagnosis also felt like a puzzle piece that had been missing because of all the problems I had, but no answers as to why.

It has been a long couple of weeks with papers and finals, not to mention all the rain we have had which made the days so gloomy. It doesn't help that I slipped and fell last week nearly doing to splits. A majority of the weight went through my bad "right" hip. I have been in extreme pain since. I did go and see Dr. Maiers yesterday to look at my hip and although there are no new fractures, I very likely could have worsened the labral tear. I am suppose to let my hip rest which is nothing new, but is important since the fall. We are going to hold off on the MRI for right now. I have a lumbar sympathetic nerve block next week and donate a pint of blood the following week as well as get a baseline echocardiogram for my heart because of the EDS and surgery is next month! And of course, it will be a relief once this semester is over!