EDSers United

                   

                     #EDSersUnited

                     #WIRCforRare 

"I support EDSers United!"

- Christine

"Realizing that there is a way to be connected beyond just making sure my bones are all lined up has transformed my every day. The power of the human connection is amazing. I can't get out much, but I can be connected better than before - literally at the speed of light! Yay internet and technology.... but most of all, yay to the human connection which will always find a way. This gives me strength, hope and power. Thank you."

- Jayna

"Ehlers Danlos Syndrome is something I've remained mindful of since I first learned about it, which tells me that awareness works. I look forward to the day when there is a cure."

- Chris

"Thank you for creating this website! My favorite part is the brochures to give to doctors and other people to spread awareness and help others understand what we go through and how to diagnose people in the future! I will definitely be spreading these around las vegas! Who's in with me?!?

- Kadie Harper

"Thanks, I came across your site today and want to say thank you. I am still reading and looking at things and like what I see thus far."

- Christina Rightmer

"Hi this is amazing! Hello fellow EDSers!"

- Joanna

"I'm glad I came across this site. I wish doctors knew more about EDS. If they would just listen to us they might learn a thing or two. Reading others stories have helped me in a lot of ways. You begin to feel like no one understands. Thanks."

- Betty Lowe

"I appreciate you for taking the time to educate others about EDS. After suffering a carotid dissection and two aneurysms, I'm now being tested for vascular EDS. This site has been helpful to me. Thanks."

- BettyTara Doleman, Pharm.D.

"This site is great. Was diagnosed with EDS3 in February and have been worrying myself sick about it all. Thank you!"

- Alice

"Thank you for this site my daughter is 12 and was diagnosed yesterday with Type 3 and I have been literally making myself sick by looking up everything I can about this!"

- Brandi Handley

"Good luck with everything!"

- Tracey (Deer Creek)

"Thanks so much for this site, it's great!"

- Michaela

"Hi Nadia!! I just want to say that my sister was recently diagnosed with EDS and your site has def. helped my entire family in understanding this condition. Thank you so much for your time and effort put to helping others."

- James

"It took my 19 year old son getting diagnosed for my 38 year old son and myself to be diagnosed. So many years in pain with no answer, so many injuries that could have been avoided had we known. We do need to spread the word. Thanks for all you do."

- Brenda T.

"Keep up the good work."

- Kelly James

"Thanks for all this, really helpful!! I am 13 and have EDS 3."

- Tiri

"Thank you sooo much for this website! I have been struggling with EDS my whole life but only recently have been given the name of it. I am 19 and living with EDS type 3 and 4. It is so great to hear stories of others going through the same things I do. Please keep up the good work! This website truly made my day! *Gentle Hugs to Everyone*"

- Cheyenne Love

"Diagnosed at 33, along with my 3 children, it has been a lifelong struggle to find answers to the myriad of medical problems we've faced. The struggle continues, as 90% of the doctors we've seen have either never heard of EDS, or think all EDSers have the classic "textbook" symptoms. Thank you for helping spread awareness!

- Star Squires

"Dear Nadia, have faith, believe, be strong, and never give up. Love auntie Linda"

- Linda James

"EDS ruined my life! Well it's not completely ruined, but I'm sure you all know what I mean. I'm looking for any support, advice, and information I can get after being lost in the military medical world for 2 years before being given the boot!"

-Rachel Astete

"There are so many misunderstandings and outright lack of information about EDS. This really needs to change and I commend all those who spread the word."

- Corrinne Davies

"Never got diagnosed till about a year ago when I was 13. Now it is hard to be alone and none of my class mates understand, they always say, 'walk it off,' and 'you can't hurt all the time' or 'you're just faking it!' So I have been searching for awareness and support groups. I know it's hard but we will all be alright in the end. I am going into my second surgery trying to fix my knee because I tore my meniscus and all the surgeons are scared to touch me! Finally found one who is hesitant but understand the need for surgery I was walking on a blown knee for over a year and all the doctors would have known if they looked at the MRI, an they told me it was in my head and that I needed to see a psychiatrist. Anyways, nice to see something done for awareness because there are tons of people out there that don't even know what this is. So Thanks edsers.com for spreading the word and for support and understanding."

- Heather Brown

"I am so happy to finally have a diagnosis! What a wonderful site as well. Thank you and bless you all"

- Dawn Michel

Join the supporters of the Treatment and Research Center for Rare Genetic Conditions!




"This is a great organization."

- Talia

"Thank you for supporting the EDS Community."

- Annette


The Voices of the Community


This Support Wall displays direct quotes from the people EDSers United has reached and created an impact. The lives that have been positively affected by EDSers United is the driving force for our team to remain Strong, Connected, and United. Thank you for keeping our team motivated.


"Thank you for helping me to realize that I am not alone."

- Liz

"When one person speaks all you hear is a whimper, when a heard speaks you hear a roar."

- Sarah

"Thank you for bringing us together, closer to hope for a cure."

- Adeena

"Thank you for keeping our community informed and connected."

- Jasmine

"Thank you."

- Nikki

"To meet people that are going through, have gone through, and have experienced the same things as I have and to have their love and support.....that means....there literally are no words as to how much that means to a person like me"

- Jennifer Kremenik

"Being a Zebra means something different to each and every single person......One thing that I think that all of us have in common is that we will continue to fight with everything we have no matter what.......we put up and go through so much that we are a special breed of people and we are a group that has a kick ass support system and I think we have to tip our hats off to every social media site out there....it is because of them that so many of us have the support we need from all around the world!"

- Jennifer K.


Copyright 2010-2016. EDSers United. All Rights Reserved.

"Great website! Very informational." 

- Juan Floriano

"Lot of great information in one place. Thanks."

- Brenda Teague

"I found your videos on youtube which led me to here. Great job putting this together! I was finally diagnosed with EDS type 3 in January of 2010 at the age of 40 after seeing an episode of Mystery Diagnosis featuring EDS on TV. 2 out of 3 of my children were diagnosed with EDS type 3 in May of 2010 (my 22 year old daughter and my 14 year old son). I believe my 9 year old daughter has it too but she didn't want to have it so during the appointment she presented it hurt when they would barely bend her fingers and stuff. (Then she comes home and touches her thumb flat against her wrist and her fingers actually bend back further then even mine do…but…what do you do?) I wish you the best! Keep smiling! Some days it's really hard to, I know, but if you keep forcing yourself to smile in spite of it all, it really does help! :-D"

- Brenda Edwards

"Thank you for taking the time and having the mind to put together such a website. I have EDS hyper mobility type, and I have found that there is lots of ignorance out there, among the general population and with doctors, when it comes to this disorder. There needs to be as much information available as possible. Much appreciation for what you're doing."

- Monica Roberts

"I have EDS Type III and 2 of my 3 children have been diagnosed with the 3rd child possibly having a pending diagnosis in the future. Symptoms: I have hyper flexibility, scoliosis, mitral valve prolapse, restless leg syndrome. My oldest has hyper mobility, joint pain and swelling, very stretchy skin, restless leg syndrome, nerve compressions. The second child has hypermobility, frequent dislocations, joint pain and swelling, migraines, scoliosis, IBS, muscle spasms, and TMJ. My youngest child has joint pain, muscular pain, and IBS. All 4 of us have POTS. Thank you for starting his website and your YouTube channel. Awareness and sharing are so important!

- Wendy Kimberly

"Thank you for making this site. I've watched many of your videos on youtube and feel your pain! I shared this on my Facebook page and a lot of my friends read links I put on there for support. This will really help a lot of people understand…well better than before, about life with EDS. Thank you."

- Molly Hill

"Thank you so much for your efforts in putting this website together."

- Robin Napolitan

"This site is great!!! I wish I would have known about this sooner :o) Thanks Nadia."

- Guy Trencano

"Very nice job of pulling together considerable misunderstanding of EDS that applies to GJH as well. Considerable myths and anecdotal presumptions regarding EDS have been succinctly dispelled through your efforts."

- Dr. Paul Jordan

"We are with you, we pray that God is with you."

- Candy and Julio

"So glad to see this! Couldn't wait to get my name on this list! Going to buy some of the jewelry asap. Thank you for doing this site!!!"

- Wendy Swanson

"I was diagnosed at 48 and thanks to sites like this one, I will not suffer alone anymore. Thanks."

- Leslie A. Bennet

To make our world a better place is a good mission; even when the odds are against you…take care."

- Daniel Nieves

"Hey Nadia, you are one of the greatest person I have ever met. Please let me know if there is anything I can do to help."

- Nick-Roy Green

"This is a great website creating awareness for such a rare condition. I don't have EDS but I wish everyone the best and hope there will be better medical advancements in the future."

- Ed Song

"Nadia, this is your aunt Linda's best friend wishing you a world of love and my prayers are with you through out this journey. We all love you. May God bless."

- Ernestine Howe

"I am so glad that I found this site! I am wanting to volunteer and make May something big this year. Been diagnosed with Classical Type EDS for 15 years and never new of EDS Awareness Month until recently. I want so desperately to know someone or communicate with others who have this invisible illness."

- Devan Weston

"Hello All :) I'm an EDS mom of 3 kids. Two of my 3 kids have EDS also. My daughters are 18 and 10 years old. Life is not always easy and we all deal with daily pain. I'm very thankful for websites like these. As you all know, it's not easy for others to understand this illness."

- Michelle Flier

"I'm from a small island off of the UK called the Isle of Wight. I recently got diagnosed with EDS along with my mum, sister and 8 yr old son, although it is a relief after a whole lifetime of medical issues to put to a name to its. Its very frustrating that there are no EDS consults on the island and no doctor has heard of it! We all have to travel oversea about 3 hours away to the nearest (and only) EDS consultant in England! I'm joining EDS sites now hoping to gain information on how to spread knowledge to this island :-)"

- Grice

"My donations to EDSers United is in support of my children."

- Linda

"My donation to EDSers United is in support of the strongest EDSer I know and love, my mom.""

- Alyssa

"My donation to EDSers United is in support of my wonderful husband."

- Susie

"In loving memory of my mother, the strongest EDSer I knew."

-Jason

"You've done for many of us what we were unable to do on our own!"

- Sarah