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Humour for EDS People : )

Frilled-Lizard
  • By Frilled-Lizard · New reply April 29, 2013
  • In General discussion · 8 replies
  • Hi Everyone Thought I would start this up to show that we have a sense if humour : ) Here are some Austrailan Idioms or Aussie slang. I have given you some sayings to chastise the negative and unbelieving ...

thickening of artery????

dani_w
  • By dani_w · New reply April 29, 2013
  • In Vascular EDS (Type IV) · 7 replies
  • Hi, I have just had my first MRI scan since being diagnosed with VEDS. My results came back as normal which im so pleased about!!! In my results letter it said that it showed a slight 'abnormality' in ...

EDS Sleep paralysis - what helped me

TJaw
  • By TJaw · New reply April 29, 2013
  • In Newly diagnosed · 2 replies
  • Hi, I was reading through older posts about sleep paralysis and wanted to share my experiences and what has helped me. I used to wake up unable to move or speak which is really scary no matter how many ...

EDS Support Group of Greater Kansas City

kmnkdz
  • By kmnkdz · New reply April 28, 2013
  • In Local support groups · 7 replies
  • The first meeting of the EDS support group in the KC Metro area is right around the corner. It will be very informal as we get to know each other and the expectations we each hold for the group. Everyone ...

Support group in Metro Detroit area

Kiki7373
  • By Kiki7373 · New reply April 28, 2013
  • In Local support groups · 13 replies
  • Hi, I work in EyeCare and we have a patient in our office who has EDS. She has been searching and searching for a support group in her area. Does anybody know of a group or would anybody like to start ...

Specific gene for EDS type III?

hopeful-undertone
  • By hopeful-undertone · New reply April 28, 2013
  • In Hypermobile EDS (Type III) · 8 replies
  • Alrighty so I was wondering if anybody knew if there was an actual specific gene designated for EDS type 3? I got a blood test that was sent off to washington for genetic testing last month and was curious ...

Pls help! New J-tube hurts too much to feed.

fbrodya
  • By fbrodya · New reply April 28, 2013
  • In Gastrointestinal issues · 5 replies
  • My 21 year old daughter's going on her second week in the hospital after JTube surgery. She had stopped being able to eat and drink several weeks ago (vomiting everything) and was just getting IV saline ...

Carolinas EDS, Chiari & More Conference 2014!

mrsgrampus
  • By mrsgrampus · New reply April 27, 2013
  • In EDS awareness · 11 replies
  • This is an email I sent to my PCP who mentioned to me he wants to help me start a Conference in Charlotte NC. Anyone that is so moved to help organize, have tips, advice, have connections...please help ...

Silver ring splints

Elyshia
  • By Elyshia · New reply April 27, 2013
  • In Bones, joints and muscles · 6 replies
  • Hi there, Just wondering if anyone has been able to buy silver ring splints in Australia? I've been searching and can't find anywhere that sells them. Any suggestions would be much appreciated ...

Trouble swallowing

kiki333
  • By kiki333 · New reply April 27, 2013
  • In Hypermobile EDS (Type III) · 24 replies
  • Does anyone else have trouble swallowing? Sometimes I feel like my throat doesn't "work" properly - I had a barium swallow and they found acid reflux every time that horrible stuff went down, but with ...

PLEASE READ!! Finally found something that helps!!!

shannabell80
  • By shannabell80 · New reply April 27, 2013
  • In Newly diagnosed · 6 replies
  • If you, or someone you love, is suffering from EDS, I have something to share! First, let me explain. My son, AJ, is almost 12 and has been experiencing pain in his joints for years. A little over a year ...

New EDS & MCAD Blog

crossfell
  • By crossfell · New reply April 27, 2013
  • In General discussion · 5 replies
  • Hi all I'm fairly new to the whole EDS world, only being diagnosed in 2010. I'm now also waiting for an appt (in June) to see if I have MCAD. As many of you will have discovered, there's lots of medical ...

Found relief for subluxed SI joint

Zyp
  • By Zyp · New reply April 27, 2013
  • In Bones, joints and muscles · 9 replies
  • Most of my back pain these days comes from my SI joint, which seems to be "out" more often than "in" these days. In my Internet search I came upon some very simple exercises/methods to release the SI ...

EDS Proficient Docs in LOS ANGELES

Lamel
  • By Lamel · New reply April 27, 2013
  • In General discussion · 11 replies
  • Does anyone know of doctors (especially neurosurgeron, neuro-opthomologist, gastric docs and physical therapists) in LOS ANGELES that are EDS proficient?? I just saw Dr. Francomano and she gave me a list ...

sorry about the essay

dani_w
  • By dani_w · New reply April 27, 2013
  • In Vascular EDS (Type IV) · 16 replies
  • I lost my mam 19 months ago which led us to finding out she had VEDS something we had never heard off! Me my brother and sister got tested and it came back that I was the only one who inherited it that ...

cervical traction

bluemoon41997
  • By bluemoon41997 · New reply April 26, 2013
  • In Hypermobile EDS (Type III) · 15 replies
  • Has anyone with EDS tried light or mild cervical traction for relief from neck pain?? I would normally think it would not be recommended considering it would likely stretch the joints. However, I am a ...

IV Iron

mom2s
  • By mom2s · New reply April 26, 2013
  • In Hypermobile EDS (Type III) · 10 replies
  • We are considering having my daughter get iron intrvenously as her iron absorbtion levels are very low and she can't take iron as she has gastroparesis. Has anyone had experience with IV iron? Thanks ...

Hand arthritis progression questions

JPlace
  • By JPlace · New reply April 26, 2013
  • In Bones, joints and muscles · 18 replies
  • Hello - I have HEDS and I was wondering about the progression of hand arthritis. I started having hand knuckles/joints pain over a year ago. Now I have nodes (I think they call them) growing on each of ...

neurosurgeon to eval for tethered cord?-- dc area

sophie4
  • By sophie4 · Posted April 26, 2013
  • In Hypermobile EDS (Type III) · 0 replies
  • I met last week with Dr. Francomano (wow-- she was amazing!), who suggested that I see Dr. Fraser Henderson In Chevy Chase to be evaluated for possible tethered cord. The problem is that Dr. Henderson ...

Looking for expert doctor

BoydBerkowitz
  • By BoydBerkowitz · New reply April 25, 2013
  • In Hypermobile EDS (Type III) · 3 replies
  • Hi, I'm looking for an expert EDS doctor in the San Francisco Bay Area. Does anyone have any recommendations? Thank you ...

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