RARE DISEASE DAY!

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Tiffany Kathleen Administrator Posts: 7	RARE DISEASE DAY! Feb 1, 2014 18:32:26 GMT -5 Quote Select Post Deselect Post Link to Post Member Give Gift Back to Top Post by Tiffany Kathleen on Feb 1, 2014 18:32:26 GMT -5 ehlers-danlossyndromecanada.org/rare-disease-day-2014.html

tili1
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Posts: 2

RARE DISEASE DAY! Aug 2, 2014 13:51:07 GMT -5

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Post by tili1 on Aug 2, 2014 13:51:07 GMT -5

My name is Tal Levi I have been diagnosed with vascular ehlers danlos in the year 2000 .My mother and brother passed away because off complications.I had only one dissection in 2008 and now nothing occurred.I feel fatigue at times,not so much energy.Myimune system is weak.Im on Celectol which really helps.

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catgrass: Thanks

Mar 16, 2014 0:16:14 GMT -5

Deleted: Not broken just bent! Apr 17, 2014 10:29:12 GMT -5

Carrie Lawson: glad to be here

May 3, 2014 17:40:20 GMT -5

catgrass: Does anyone know of a physiotherapist in Toronto with experience treating EDS-Hypermobility? I have very painful shoulder tendonitis and fluid in the biceps tendon sheath but I have had many bad experiences with physio and I'm kind of afraid. May 7, 2014 20:19:52 GMT -5

Carrie Lawson: 8DI have no idea how to post stuff, except shouts of course! May 8, 2014 17:57:41 GMT -5

tili1: I'm looking for any specailist that good keep looking after my medical history. Aug 2, 2014 13:45:55 GMT -5

sdk: I had a Doctor in the ER tell me that "all Ehlers Danlos is, is being hypermobile. " How do you educate the doctors about EDS? Oct 9, 2014 17:42:03 GMT -5

boughner12: any suggested time fram for angio seal to heal still gives me pain Feb 4, 2015 16:18:18 GMT -5

boughner12: been taking large doses o vitamine C daily Feb 4, 2015 16:19:13 GMT -5

albertabj: Anyone have a sibling(s) who distance themself since the ED diagnosis? My sibling treats me like I chose to get this. I try hard NOT to make anything of it or draw attention. Mar 26, 2015 15:28:51 GMT -5

RARE DISEASE DAY!

Post by Tiffany Kathleen on Feb 1, 2014 18:32:26 GMT -5

Post by tili1 on Aug 2, 2014 13:51:07 GMT -5

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