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MCAD support meeting Sun 5/26/13 PDX

Jandroid
  • By Jandroid · Posted 1:31 am
  • Discussion in EDS awareness · 0 replies
  • Don't want to forget to share we're also having a PNW region MCAD (Mastocytosis and MCAS) support meeting on Sunday May 26th, the day after our (not so) EDS Mini Conference. This is because we're finding ...

REACHING OUT

Mystic2013
  • By Mystic2013 · Posted 1:03 am
  • Discussion in Parents of children with EDS · 1 reply
  • Hey there. I am so amazed at my 13 year old daughter's ability to keep going at it. Every evening she has had rt. Shoulder inferior/posterior subluxation/dislocation (it makes her scapula look like she ...

Should i stop taking Ibuprofen?

angelXofXanimals
  • By angelXofXanimals · Posted yesterday at 7:30 pm
  • Discussion in Pain management · 4 replies
  • I am currently taking Equate ibuprofen for my headaches and when i'm on my period. It's day time and night time ( they're in separate bottles) I take two for night time and one for day time. No i'm not ...

infant with feeding issues

mamadub
  • By mamadub · Posted yesterday at 5:32 pm
  • Discussion in Parents of children with EDS · 7 replies
  • Hello, i have a 4 week old grandson that is having issues with suck/swallow/breathing. His father, my son has ehlers along with 2 other sons. My questions are : at what age do they test for ehlers, how ...

Portland, OR EDS Events 5/18 & 5/25

Jandroid
  • By Jandroid · Posted yesterday at 5:31 pm
  • Discussion in EDS awareness · 1 reply
  • Hi all, just a friendly reminder we're having a family friendly Awareness Month "Walk & Roll" TOMORROW (Saturday) May 18th starting at 2 pm FROM the Salmon Street Fountain on downtown Portland Waterfront ...

Knee replacement/frustrated with new doc (again)

Ayleeann
  • By Ayleeann · Posted yesterday at 4:10 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • Sooooo I have moved back to the "country" lol in Montana after leaving Los Angeles (retired early due to EDS disabilities keeping me from being able to do my job at 55 last year), and couldn't stay there ...

comfortable shoes? maybe i found them!

MStratford
  • By MStratford · Posted yesterday at 3:45 pm
  • Discussion in General discussion · 5 replies
  • Hi there! Just had to share something super exciting since I work on my feet 8-10 hours at a time and can't sit because of a nerve injury and have plantar fasciitis and posterior tibial tendinitis. Ikes ...

Decision

maddy527
  • By maddy527 · Posted yesterday at 2:29 pm
  • Journal · 1 reply
  • It's not luck; it's deciding ...

throat blisters

Joanne479
  • By Joanne479 · Posted yesterday at 12:51 pm
  • Discussion in General discussion · 7 replies
  • Hi I am hoping that some of you may be able to help me. My daughter who is 17 has had recurrent throat blisters since she was 7 years old. She was hospitalized initially but the doctors were unable to ...

EDS Awareness Article

betz2531
  • By betz2531 · Posted yesterday at 12:48 pm
  • Discussion in EDS awareness · 7 replies
  • We are pleased that today the local paper did a story on our friend, my daughter, and our state Proclamation. We are trying to increase awareness and understanding of EDS and POTS. Both have impacted ...

I think my job is running me down

Dcrossley
  • By Dcrossley · Posted yesterday at 3:07 am
  • Discussion in Vascular EDS (Type IV) · 1 reply
  • Hello, a month ago i went to John Hopkins for my yearly check up. Good news is all the test were the same, But they had to up my BP meds and add some. Im so thankful for the news, but about 2 months ago ...

The World

maddy527
  • By maddy527 · Posted May 16, 2013
  • Journal · 1 reply
  • The true, moral answer is not money. But the realistic answer is money. This world can be so unfair ...

Medic Alert ?

Fryebaby78
  • By Fryebaby78 · Posted May 16, 2013
  • Discussion in Hypermobile EDS (Type III) · 11 replies
  • I have hypermobile EDS and my brother has Hemophilia, and He has a medic alert bracelet and I was wondering if I should get one. My mom said I don't need one, but I was trying to figure out whether I ...

"Embarrassed to be Sick" published on KevinMD

Zyp
  • By Zyp · Posted May 16, 2013
  • Journal · 4 replies
  • With a different title, this Inspire journal post I wrote was just published in the widely read medical blog, KevinMD: "In today’s society, chronic illness is viewed as a personal failing" http://www.kevinmd.com/blog/2013/05/toda ...

Has anyone else had this weird reaction to meloxicam?

Maddie50322
  • By Maddie50322 · Posted May 16, 2013
  • Discussion in Pain management · 6 replies
  • Ever since i have been taking this medicine I have been so tired and no enrgy and at some points dizzy. Also I have have been having vision changes where the room looks fuzzy or the lights look really ...

keystone tesing

lori326
  • By lori326 · Posted May 16, 2013
  • Journal · 0 replies
  • Anyone know about the new keystone tesing in pa and how to deal with EDS/disability and needing to test at a different time/day than the rest. My daughter is having trouble getting there to take AND FEELING ...

Prolotherapy for EDS injuries

Ayleeann
  • By Ayleeann · Posted May 16, 2013
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • I started prolotherapy injections into my left knee in January. Has anyone tried this? Insurance won't cover it because its considered alternative. I have EDS III and currently suffering from a torn meniscus ...

Foot pain

EDS_SUCKS
  • By EDS_SUCKS · Posted May 16, 2013
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • My feet hurt soo bad. Its not plantar faciitis or a Morton's neuroma. Ive had both. The pain is right on top where my foot would connect to my toes. Both feet hurt and it is crippling. Its unbearable ...

Pain at Blood Draw Site

happybana
  • By happybana · Posted May 15, 2013
  • Discussion in Dermatology / wound healing · 13 replies
  • I've had a lot of blood drawn lately, and every time (even the first time, so it's not like I'm just sensitive from being stuck over and over) it hurts not only when they first puncture the skin, but ...

Hmm

maddy527
  • By maddy527 · Posted May 15, 2013
  • Journal · 6 replies
  • I feel like I was born in the wrong generation ...

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