Hello and welcome to our store! We are Robin and Selkie, a mother and daughter artistic team, and we make jewelry, art, and crafts for zebras and spoonies. We are both affected by multiple rare disorders that cause chronic pain. When we aren’t homeschooling, we are working on art projects, crafts and making jewelry. So… Continue Reading »
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 »
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 »
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 »
By David ArmstrongApril 25, 2014 10:06 AM EDTBy David ArmstrongBloomberg Business Week One of the most popular treatments for neck and back pain—steroid shots—can be dangerous, and in rare cases can cause paralysis and death, the U.S. Food and Drug Administration warned this week. The FDA is late to the game when it comes to concern about… Continue Reading »
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.
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 »
(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 »
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 »
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!
Two of our MAB physicians are mentioned in this article. They are our heroes for giving our kids a chance at a decent quality of life. Hats off to Drs. Henderson and Francomano! When Flexible Becomes Too Flexible By Jeff Leen, Published: March 10 in the Washington Post Mildred Burke had one of the strongest necks in the… Continue Reading »
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 »
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 »
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 »
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 »
