I fight for the research project “HOPE” on Ehlers-Danlos Syndrome …

If you would like to learn about EDS programs in other countries see this article:

“Hello, I’m Valerie, I’m 44 years old and severely affected by Ehlers-Danlos syndrome. A little more than a year ago I decided with the help of my husband to create an association to find funding for a research project on Ehlers-Danlos syndrome, to know how to manage EDS in everyday life, to help orient people waiting for a diagnosis, to inform, to explain what Ehlers-Danlos is, to give all the little “tricks” to soften everyday life, laughter and cry together, intervene in proceedings concerned administrations.

Numerous people joined our magnificent fight, EDS has no boundaries then all together we get there, the project named “HOPE” is all for the Ehlers-Danlos syndrome remains more orphan name, for future generations”

The HOPE progam is promoting research for Ehlers-Danlos syndrome

 

Click here to visit the original source of this post

  • Danilo

    Hi Baiba,We all understand your fears, elicepalsy while pregnant with your first baby (congratulations, BTW). First, let me tell you that those dang hormones during pregnancy make our joints looser, so we can feel as though we are suddenly getting much worse, very quickly. Likely, that is not the case, and after you have your baby and the hormones settle down, you will improve to pre-pregnancy condition (especially with light exercise AFTER you have recovered).My guess is that your delivery will be uneventful, as our looseness helps in the delivery room. So you can consider it a blessing for about 48 hours!I’m not sure how far along in your pregnancy you are, but it takes little or nothing for my ribs to slip out of place and I don’t have a baby inside pushing everything around!Can you tell me how you got your diagnosis? I agree with you that your case doesn’t sound typical , but none of us are very typical ! Are you in a lot of pain? Pain is very common with Type III. There is never harm in getting a second opinion (except for the cost!), if you have any doubts.I remember telling the doctors that I never had any symptoms prior to age 46. But as time went by, I was able to remember incidents that should have been clues, not to mention photos that showed my hypermobile knees. But I, too, was big into exercise and it helped keep me together.You may need to wait until your hormones have settled down after the baby is born to have your flexibility checked with the Beighton scale (did your doctor do that?). And you were right to question your family members, too. Are any of them hypermobile?BTW, have you seen those velcro binders that go under the baby bump and velcro together in the front or behind your back? I had to wear one of those every day, and it was a huge help. I think I was loose enough that everything needed a boost to help me fight against gravity.Baiba, please hang in and know that you have an excellent chance, with proper treatment and time to get through pregnancy and recovery, to turn this into a mere annoyance. Keep us posted, as we’ll all likely have some suggestions for after the baby is born!Gentle hug for you and baby,Dr. Diana

  • I just wanted to say Thank You. Thank you for tnaikg the time to type all that out. Thank you for caring. Thank you for trying to help others find an answer. I had to figure it out on my own through a 1000 google searches and cross references. Knowing what’s disabling me and causing me horrific pain has been the only relief I have yet to find. At least I no longer wonder about that. It still has not changed the fact that doctors are still looking at me like I’m fine, No big deal, Out of the 200 or so various different doctors i have phoned for an appointment, 3 have given me an appt. One GP ..who has no clue, so therefore he doesn’t even bother to return my phone calls, one who wants to given me antidepressants for pain ..yes I know that they work great for lots of types of pain. I have tried them, they make me worse in lots of other ways .and do not help MY pain. One doc I am still waiting till appt day. It has been over 5 months of the most debilitating pain of my life, without help, without caring doctors, and without a doctors concern for my well being. For over 5 months I have lived every single day and night on my couch with subluxed shoulders, collar bone(both sides), wrists,(both) thumbs x2, neck, jaw, and my skull in multiple places. That list is just the ones that are constant, every single day ..they no longer stay in place for longer than 1/2 aday, shoulders/collarbones/head have been out at various different degrees without going back to socket for the whole 5 months. the rest of the joints sublux when ever they want ..don’t even need a reason. Thank you for caring. (Gentle)Thumbs up!

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

Loading ... Loading ...