Community
Emily Comber Discusses Her Life With Ehlers-Danlos Syndrome
Emily has learned to deal with the challenges of raising 2 children despite her Ehlers-Danlos Syndrome. By EMMA INNES “A mother has been left devastated by a rare condition that leaves her barely able to cuddle her children. Emily Comber, 31, suffers from a rare syndrome that causes her constant pain and makes her joints ‘pop […]
Doctor Speaker Series – “EDS: A Dental Perspective” – Recording Available
Our presenter for December 4th was Dr. Carl Mentesana, DDS. His topic was: “EDS: A Dental Perspective“ Click Here for the recording Note: the presentation slides start after about 7 minutes into the program Addendum to the Patient Q & A Question: Please post the […]
Bethany Puts Aside Ehlers-Danlos to Help Others This Christmas
Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]
Katie – “When I reached 16 I Had Dislocated My Hips about 50 Times from EDS”
Katie Vale has finally discovered some methods to help her manage her Ehlers-Danlos Syndrome symptoms. By: Lucy Benyon Published: Sun, December 15, 2013 “Katie Vale was diagnosed with Ehlers- Danlos disease which causes regular injuries [PH] Katie, 34, lives in Essex in the UK. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her […]
Watch Ehlers-Danlos episode on “Good Morning America” – Video Link
“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse. Their daughter has been diagnosed with Ehlers-Danlos Syndrome. Click here for this story about the Huber family’s false allegations […]
EDS Awareness Speaker Series – The Evolution of Genetic Diagnosis – Recording Available
EDS Awareness invites you to watch this FREE webinar recording! Our presenter for November 20th was Stephanie Gandomi, MS, CGC, LGC She is a Licensed Genetic Counselor Her topic was: “The Evolution of Genetic Diagnosis and Why This Matters In Patient Care!” The recording of this presentation is now available at the following link: Click here to […]
Ayiana Lives With the Constant Pain That She Endures Each Day
This courageous young lady has a faith in God that helps her manage her pain from Ehlers-Danlos Syndrome. By: Daniel Elizondo Silsbee, TX Living life as a vibrant 14-year old teen is the epitome of life. Football games, birthday parties, hanging out with friends. It’s that age when you are on the brink of maturing […]
TV News Report: Ehlers-Danlos Leads to Bogus Child Abuse Allegations – Watch Videos
All charges were finally dismissed after false child abuse allegations kept Andrew Huber separated from his daughter for nine months. She has been diagnosed with EDS. Watch the videos below to hear about the family’s ordeal. Similar articles appeared on Yahoo Shine and in the news. Watch them on the Katie Couric Show which aired on […]
