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May. 11th, 2007 02:13 am (UTC)
Re: hey
I have EDS, and my daughter inherited it from me. I have classical type, and i fall into the moderate category- joint dislocations, fragile skin, bruising and bleeding.

I was diagnosed at age 3. I had a biopsy when i was 32 (5 years ago) that was positive- it's done at the University of Washington in Seattle. My daughter (and son) see a geneticist, who has diagnosed her based on her symptoms. She will have a biopsy too when she has her hernia surgery next year.

Vascular type is the scary one... I'm so sorry that you have to have the worry and the fears. How severe is your type?

May. 11th, 2007 02:24 am (UTC)
Re: hey
Unfortunately, very severe. I have already had 2 bleeds in my brain, and having babies puts my brain and vessels under even more pressure. My mom had her first aneurysm during childbirth with her 3rd child. I just lost my first tooth the other day which was devastating, as stupid as that sounds. It was one of my front teeth. So I didn't smile much in my wedding pictures, so a lot of people commented that I didn't look HAPPY to be married. My mother and I have the vascular type with overlapping classical. I have had osteoarthritis since I was 16, and was recently diagnosed with inflammatory arthritis as well. I have so many health problems I almost need a book so that I can remember them all. I don't remember if loss of teeth comes with classical, I think it still does ... but my mom and oldest brother (27) both have full dentures. My mom lost all her teeth at 19 and my brother at 23 so I thought I was doing good, and had somehow BEAT IT, when I hit 25 and still had all my teeth with no signs of rotting. Losing that tooth was a HUGE deal to me, still is, because I feel like it was just the beginning ... also because my passion in life is my singing (other than my kids) and its hard to sing when your Fs, Ss, and Ps, come out as whistles. Then I get looked down on like I'm poor, a crackhead or just don't brush my teeth. I just hate everything about Ehlers. I think my oldest daughter has it, cause she is able to walk on the joints of her toes like I did when I was younger, and she is super flexible.

I was diagnosed at 13 by symptoms, and refused the biopsy. Now they have a new blood test that can detect the mutated collagen ... so ask about that for your daughter and son. I stay up to date on the EDS sites. They also have medical bracelets, and wallet cards, to tell docs that you have the syndrome and how to treat it, since most have never heard of it.

Well I have talked your ear off now ... LOL I hate it, but Ehlers is a huge part of my life, and it is hard to talk to other people about it because they just CAN'T understand. So guess it is all flooding out of me. Thanks for listening.



Jenn the Lostmoth

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