News & Events

Jazz Pianist Noah Baerman, Who Has EDS, Puts His Energy Into Prevailing Through The Pain

BY OWEN MCNALLY Special to The Courant May 7, 2014 There have been challenging times earlier in his life when the gifted Connecticut pianist and composer Noah Baerman almost had to give up playing the piano because of the debilitating pain he has suffered from a rare, degenerative disease of the connective tissue called Ehlers-Danlos… Continue Reading »

‘I am NOT a drunk’: Teenage girl has rare fainting condition which means she collapses after 30 minutes of standing

By EMMA INNES PUBLISHED: 04:36 EST, 7 May 2014 | UPDATED: 07:34 EST, 7 May 2014 Paige Bartram, from Leeds, has Postural Tachycardia Syndrome This causes her nervous system to respond abnormally to standing up She says that when she passes out in public people assume she’s drunk On one occasion she was left unconscious in the street for 35 minutes… Continue Reading »

WNC woman says she was unfairly targeted for harassment due to handicap tag

By Nikki Davidson – bio | email ASHEVILLE, NC (FOX Carolina) – A Western North Carolina woman is speaking out after she said she’s been unfairly targeted for harassment due to a handicap. Asheville college student Jenn Kerr said the reason she was singled out has nothing to do with a disability and everything to do with her age.  Kerr… Continue Reading »

EDNF 2014 Annual Conference

The EDNF 2014 Annual Learning Conference will be held at the Hilton Americas Hotel in Houston, TX, from July 10-12!  For those of you with EDS, this is an excellent conference.  To find out more information visit the EDNF website by clicking here.

Conversion Disorder Commentary, Dr. Barnum

As part of making an educational video, Dr. Barnum (a member of TCAPP’s MAB and a practicing child and adolescent psychiatrist who works with a number of children and teens with persistent complex medical problems) interviewed a half a dozen children and parents while attending TCAPP’s Think Tank.  This article stems from those interviews, and… Continue Reading »

Loyalty the reality behind fantasy by 16-year-olds

(Photo: The Enquirer/ Tony Jones) SHARE 185 CONNECTTWEET 4COMMENTEMAILMORE FAIRFIELD TWP. – Elizabeth Schulze and Kylie Powell will sign copies of their new book Saturday at Book Bums in West Chester. It’s notable that the authors are a pair of 16-year-old Fairfield High School sophomores, and that they spent five years writing “Cursed Ones,” a 296-page fantasy/science fiction novel…. Continue Reading »

We’ve launched our new website

Check out TCAPP’s new website!  Our new design makes it easier to find information and several new TCAPP programs have been launched to better connect the community we support. Our State Outreach Program is supported by individuals who have become a part of the TCAPP team as a point of contact for each state. These… Continue Reading »

On-Line Auction – Ends April 14th! BID NOW

Please support TCAPP by participating in our on-line auction that ends April 14th.  We have some interesting and fun donations. Please check it out and bid if you can. Your money will make the 2nd Medical Think Tank in the Washington, DC area this September a reality. Bid Now!

Getting Your Life Back One Surgery at a Time

By Jeff Leen, Published: March 10 in the Washington Post Mildred Burke had one of the strongest necks in the world. A champion pro wrestler in the 1930s and the first female athlete to earn $1 million, Burke was only 5-2, but her bulging neck measured 14 inches around. To entertain the crowd, she would lie on her back… Continue Reading »

Surviving the rabbit hole

If you are reading this blog, chances are your child, or someone you love lives with a chronic pain condition. Your daily life is most likely altered, and possibly has become limited. If you are fortunate, you will have found care with the many knowledgeable and supportive medical professions who understand connective tissue disorders and… Continue Reading »

Would you like to Guest Blog?

Welcome to our new blog, Parents Talk! Since there is no manual for how to parent a child in chronic pain, or how to navigate the sometimes seemingly endless abyss of physical and emotional challenges, we have created this space to explore and discuss the unique parenting and family issues that so many of us face…. Continue Reading »

What Pain Feels LIke for Someone With Ehlers-Danlos Syndrome

Cincinnati Children’s Blog By:Kenneth Goldschneider, MD, FAAP on August 8, 2013 You might have seen Hallie’s edition of Tell Me a Story. Her journey with pain as a patient withEhlers-Danlos Syndrome (EDS) is familiar to us now, but several years ago, we had not recognized just how often EDS, a hereditary cause of hypermobility, was a cause of pain…. Continue Reading »