In looking for a topic for today’s post, I came across the information that May is EDS awareness month.
Now, I have one child diagnosed with EDS and we assume at least two others have it as well. (They have the symptoms but no doctor has diagnosed them.) We’re also fairly sure they got it from my side of the family. (The EDS specialist who diagnosed my daughter said I have at least a mild form of it.)
Since my daughter’s is not mild, I could expound on how it has affected her life. I could also explain how it affects her siblings. And in doing so I might bring some awareness to the illness.
But why would anyone take my word for it? At most, I can hyperextend a few joints. I don’t have all the other issues this illness can come with. So instead of reading what I have to say about it, I thought it’d be better to let you see, hear from young women who are dealing with EDS on a daily basis.
What follows are my daughter’s own words about EDS and a link she posted on Facebook to a YouTube video by another suffer from EDS and some of her friends with the condition.
May Enos’ Facebook post 5/25/20
My friend , put together this video for Ehlers Danlos Syndrome awareness month this year and I just thought I'd share it for anyone interested in learning about this genetic condition. The 2nd part is on her Youtube channel as well.
Ever since I was diagnosed I have had way too many conversations with my brother, sister and mom that shouldn't happen. People attack my character behind my back, to my family. Claiming that I'm not really as sick as I say I am and that I'm making it up. They call me a hypochondriac, crazy and say that I just heard about Ehlers Danlos Syndrome and now I'm trying to convince everyone that I have it...
The truth is, I knew as much about Ehlers Danlos Syndrome as many of you before I was diagnosed- that is absolutely nothing. I had never heard about it before my doctor diagnosed me 7 years ago and those first couple of years I thought my condition was mild and that EDS was not a big deal. Turns out I was wrong though, because it's affecting me a lot more than I ever imagined. Due to Ehlers-Danlos Syndrome I have Chiari Malformation, early onset degenerative disc disease with spinal instability, kyphosis, scoliosis and spinal cervical stenosis, Dysautonomia, heart valve issues, and I had an aortic aneurysm 2 years ago. I have Mast cell activation syndrome, and digestive tract paralysis (my diagnosis here have included gastroparesis, gastrointestinal dysmotility, and Chronic Intestinal Pseudo Obstruction among other things) where essentially my entire digestive tract from the esophagus to colon is paralyzed and I also have bladder paralysis. My abdominal organs are prolapsed by a condition called Visceroptosis which has been classified as a rare and severe complication of EDS. Along with these symptoms I also have daily joint subluxations (partial dislocations) and dislocations, soft velvety skin, stretchy skin, and easy bruising. I honestly could not make this stuff up if I tried.
My worst symptoms of EDS are the digestive issues (the paralysis and organ prolapse combined) and MCAS which has sent me into atypical anaphylactic reactions to so many different things. Essentially I'm allergic to life but my worst triggers have been nutrition (oral, enteral and parenteral nutrition) as well as various chemicals in medications- which is why I'm not on many medications right now.
Everyone with EDS and it's various comorbid conditions is different. This is just me. I didn't know about EDS before I was diagnosed and now I know more than most of my doctors. Though I never imagined my life would be like this I am grateful for my feeding tube, benadryl, and face masks (as well as my old central line) that have helped keep me alive as well as for my wheelchair, catheters, braces, ring splints, forearm crutches and heating pad. 🙂
I think the biggest lesson I have learned through all of this is that you have to believe in yourself. I had to learn to listen to my body because doctors studied medicine, but they only know textbook and I'm definitely NOT text book!
Now here is the link she gave in her post. My EDS stories/EDS Awareness
Now you are a little bit more aware.
Smile. Make the day a brighter day.