Awareness

Active Teen Gets Her Life Back after Discovering POTS

July 9, 2018 by Heather Bauders, Senior Public Relations Specialist     Every day of restored health is a blessing for Christina Corturillo and her mom, Kathy. What do you do when you go from being an active kid to unable to walk? What do you do when doctors think the problem is mental, but you know […]

Doctor said it was all in her head, but it was ‘the most common condition’

POSTED 5:48 AM, JUNE 26, 2018, BY CNN WIRE, UPDATED AT 07:37AM, JUNE 26, 2018 Fox 59 File photo Super Bowl MVP Nick Foles is ecstatic about leading the Philadelphia Eagles to victory, but that’s not the triumph he celebrates daily. He gives that medal to his wife, Tori Foles, for what he calls her “amazing strength” […]

How to Improve Your Quality of Life While Living with Ehlers-Danlos

Posted on June 20, 2018 in Alternative Pain Therapy, Diseases & Conditions,   By Ellen Lenox Smith. Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with defective connective tissue, the “glue” which holds the body together. Currently, there is still no permanent cure to this problem, so living life with this condition means learning to […]

Woman called “Faker” Because of POTS an Invisible Condition

Many “invisible” illnesses like POTS and Ehlers-Danlos Syndromes (EDS) are not understood by the medical community and the general public. Learn more and spread awareness in your community. Standing up for POTS EDS Awareness Education

Brown Medical School Cerebrospinal Fluid Disorders Symposium

RI EDS Awareness and Support Group display   Krista Brack krista@rieds.org www.rieds.org We made candy brains for the neurosurgeons, it was a huge hit.    

CSF – Unite@thehill – June 23-25, 2018

For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]

Mandy Harvey’s Performance in Warren Ohio

We were excited to attend Mandy Harvey’s performance in Warren, Ohio She was interviewed and described her struggles with Ehlers-Danlos Syndromes. Click here for a link to the recording of her performance. She was introduced around the 18 minute time mark. Click here for more about Mandy Harvey

W Virginia Tri-state EDS support group promoting EDS Awareness Month 

Tri-state EDS support group members were interviewed to discuss EDS Awareness Month Ashton Nesmith-Kochera is with Victoria Graham and 8 others By: Jonathan Hunter Updated: May 17, 2018 11:18 PM EDT Click here for the link to the video of this interview   MARTINSBURG, W.Va. – The month of May is Ehlers-Danlos Syndrome Awareness month. EDS is an inherited condition that affects […]