My life as a Zebra... with Ehlers Danlos Syndrome
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Uploader Comments (jkweirich)
All Comments (13)
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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.
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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?
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Hi! :)
I also have Elher Danlos syndrome and so does my older sister Heather she is almost 20 and have been in a wheelchair since she was 16, we both Dislocate our hips (alot!) and our shoulders sometime just by their self they come out because we live in england there is only 1 EDS doctor in the country and we cant afford a trip to America to get propper treatment. Do you have Physio or anything like that?
All my love and best wishes in the future Lucy x
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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
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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 :)
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@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.
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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.
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Last year a spinal surgeon sent me to physical therapy to see if it could help my pain.
The director said he didn't know what they could do with me, the people they get is because they cannot move .
Yet I could move better than anyone they had ever seen in their life.
I ended up getting the information off of the net and educating them on the proper types of exercise for those of us with EDS.
I wish you the best!
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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.
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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.
jinnai7 2 years ago
Thank you! I finally feel like I'm getting the proper health care team together to give me the best quality of life possible.
jkweirich 2 years ago