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Post by dizzycheermom on Jul 25, 2016 23:44:38 GMT
Hi Peas! My daughter was just diagnosed with EDS type 3. Just wanted to see if there were other zebras here or anyone familiar with it.
Thanks in advance!
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Post by Delta Dawn on Jul 25, 2016 23:54:16 GMT
I have a good friend from high school with it. I don't know which type she has. She posted her certificate on Facebook about it being recognized as a genetic mutation.
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Post by jinxmom2003 on Jul 26, 2016 0:31:08 GMT
A high school friend of my daughters had the Vascular type. Much more serious. She did not survive.
Praying your our daughter does well.
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Post by dewryce on Jul 26, 2016 0:35:10 GMT
I have hyper mobile joints, but haven't been diagnosed with EDS. The joints that are most affected for me are my knees and my hips. And I'm about to have an MRI for sacro-iliac joint pain and if it is not due to my psoriatic arthritis we will consider that it could be to the hypermobility as well. After we get my fibromyalgia pain under control I will be going to see a physical therapist to build up certain leg muscles to help support my knees so that my joints aren't stressed as much.
The biggest thing I have to be aware of right now is not turning my upper body while keeping my feet stationary on the floor as it causes a lot of knee pain. Showering is pretty painful. And when I slide out of booths at restaurants I have to be careful how I turn my leg and open my hip because it can move around so that I can't put any weight in it. I have never been to a doctor when that happens (because I can't move LOL) so I'm not certain if that is technically considered dislocated or not.
I did have Premature Rupture of Membranes when I was pregnant, and it turns out it may be related so I really wish I had known about this much earlier in my life. Also, I could have built up various muscles and known exactly why I was hurting and how to help it so I'm glad your DD is getting help so early on. When I was younger I just knew I was really flexible and had natural dancer's turnout so I thought it was cool. Had no idea my knee and hip issues were part of it.
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pridemom
Pearl Clutcher
Posts: 2,843 
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Post by pridemom on Jul 26, 2016 1:30:01 GMT
It's one of the conditions the Arthritis Foundation provides programs and research for. I encourage you to find the regional office near you. I will warn you the AF can be kind of pushy with fundraising, but they do provide excellent programs and camps for kids and their families. We just came from the National Conference and were given a full scholarship for travel, hotel, and conference fees. My daughter has Juvenile Arthritis and camp is her favorite summer activity. www.arthritis.org/local-offices/I also found this for you. ehlers-danlos.com |
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mlana
Pearl Clutcher
Posts: 2,523
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Post by mlana on Jul 26, 2016 5:30:23 GMT
On YouTube there is a couple, Simon and Martina, who have a couple of great channels - Eat Your Kimchi, Eat Your Sushi - and on a couple of the videos they discuss how Martina deals with this. I have a lot of respect for her knowing that she is often in a great deal of pain yet trying to live her life to the fullest.
Simon posted a video recently when it was EDS month where he talked about what it was like for her to live with this and for him to live with her as she lives with this.
Marcy
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Post by wonderwoman on Jul 26, 2016 5:48:39 GMT
I believe type 3 is not life threating thank God.. My SIL had the Vascular Type. We lost her last year at the age of 32..   |
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Post by dizzycheermom on Jul 26, 2016 6:01:33 GMT
Yes we are very thankful that she does not have the vascular type. So sorry to hear about those of you that have lost friends and relatives to it.
I will check out the links and YouTube videos.
We have devoted this summer to getting her better. She never had pain or symptoms until last summer. She missed more school days than she went and was using a wheelchair to get around school. Unfortunately she lost a lot of friends and a lot of people think she was faking. Really hoping for a great senior year!
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Jul 26, 2016 12:19:59 GMT
As for school, make sure to get a 504 Plan in place if you haven't already. If you need help, let me know. I help lots of parents and recently presented at a conference for the Arthritis Foundation.
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Post by shamrock on Jul 26, 2016 14:25:00 GMT
A blogger I read recently was diagnosed. I think one of her children has it as well. She hasn't blogged a whole lot about it. But incase it could be helpful to you, the blog is www.momadvice.com/ |
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msliz
Drama Llama
The Procrastinator
Posts: 6,419
Jun 26, 2014 21:32:34 GMT
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Post by msliz on Jul 26, 2016 16:04:02 GMT
I belong to a FB group for parents of kids with POTS and ED because my DD has Dysautonomia. I'm learning a lot about ED from the "zebra" moms.  |
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Post by christine58 on Jul 26, 2016 17:08:01 GMT
As for school, make sure to get a 504 Plan in place if you haven't already. If you need help, let me know. I help lots of parents and recently presented at a conference for the Arthritis Foundation. This!~~ |
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Post by dizzycheermom on Jul 27, 2016 2:43:44 GMT
Yes we did a 504 plan this past spring, so that is out of the way! Thanks again for all of the links! Glad to see that people are familiar with it!
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Post by dizzycheermom on Jul 27, 2016 2:44:23 GMT
Oh and MsLiz, my daughter also has POTS.
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msliz
Drama Llama
The Procrastinator
Posts: 6,419
Jun 26, 2014 21:32:34 GMT
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Post by msliz on Jul 27, 2016 4:19:48 GMT
I just assumed she did. POTS seems to be a pretty major component of ED. I hope she's managing well enough.
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