Upload

My life as a Zebra... with Ehlers Danlos Syndrome

by jkweirich • 6,703 views

MAY IS EDS AWARENESS MONTH!!! SPREAD THE WORD! Hello everyone, This is just an update on my visit/testing with the cardiologist and my visit to a new doctor that I had today. I found out that I may...

I strongly suspect I have Ehlers-Danlos syndrome and will hopefully be seeing a doctor this week for evaluation. I almost cried when you mentioned the heart monitor. I'm only 22 and had to wear a 30 day event monitor, have had 2 echos, and a treadmill stress test. Is this common amongst people with EDS?
Report spam or abuse
i'm doing physical rehabilitation, it's hard enought that i have to walk downtown after school to get there (my legs are already subluxed before i've even gotten half way there) but it does nothing to help me, i've been doing it for over 6 months and i still feel as bad as i did in november.
Report spam or abuse
I'm 18 too, and I have the classical type. I'm in Shriner's Children's Hospital. I'm happy to see this kinda stuff :)
Report spam or abuse
Glad to hear you've got a good doc! Its so hard to find one when you have EDS. I went through plenty to find a good doc myself. Are you going to the National Connective Tissue Disorders Conference this year? If you have finger issues, check into silver splint company, their splints are functional AND they don't look like a hideous medical device.
Report spam or abuse
Glad you found someone who takes himself seriously enough as a doctor to get you the right care. Stay strong.. you have a very very tough road still ahead of you. I will be praying for you to get the best care and to keep you strong. God will bless you, just stay strong, and if you aren't strong enough (read: no one is), then rely on His strength.
Report spam or abuse
I would also have loved that someone could have found that i was suffering from eds vascualr before i gave birth to two kids and gotten through several operations.. all hospital is in such a hurry to kick one out of the hospital, even though you´re in a lot of pain- i have never been take seriously !!! Im from Denmark
Report spam or abuse
I went to a doctor who heard what I had to say and then basically dismissed me. Didn't give me a proper examination. I have been laughed/scoffed at when I say I have trouble gripping things etc. I hope to find a doctor who can help me out.
Report spam or abuse
Hi, I have a daughter who has suffered since she was 9 years old. The first time she told me about her pain, she was 9. We had just returned from a trip to Ireland, England and Wales and, of course, walked, walked, walked. Well a month after we were home she yelled out, "Mommy, my knees feel like they have bees in them!" She is nearing 18 now and we have been to St. Louis Children's Hospital in St. Louis, MO... No one seems to take it seriously. Very sad.
Report spam or abuse
It must have been so good for someone to understand and talk to you properly. It must have been horrible to have it affect you like this every day, and not have it explained properly. They surely don't appreciate the difference it would have made to you. M y doctor is figuring out who to send me to, after i showed him my ridiculously stretchy skin, and hyper extensible thumbs. And the type 4 suggestion must be scary, I hope they can rule it out, or that it doesnt cause you any problems.
Report spam or abuse
Thank you! I finally feel like I'm getting the proper health care team together to give me the best quality of life possible.
Report spam or abuse
@miriamsusongrn I'm 18 too and I have Hypermobility type. I was ill for 4 years and the doctors at ULCA and Mayo Clinic could figure it out. I was watching a medical show on tv and it lead me to EDS. My mom and I went to a rheumatologist and he did some biopsies and a blood test. I was just diagnosed this week. I remember not that long ago I was playing a dancing game and my elbow just popped out of place. Another time was my little 30lbs dog dislocated my shoulder by pulling on her leash.
Report spam or abuse
Sign in to add this to Watch Later

Add to