News & Events

A Not So Normal, Normal Week

By Karen Richards Some things are just so ridiculous to imagine we cannot possibly comprehend them. My life is one of those things. I am fourteen. I would like to say I’m beautiful and smart, but that might be pushing it. People see me and they think that I am normal but that’s the thing… I am not normal at all. I have… Continue Reading »

Suggested medical work-up for those traveling to see Ehlers Danlos specialists

The following document was agreed upon by physicians who attended the 2014 TCAPP Physician Think Tank on Ehlers Danlos Syndrome (EDS) and Co-Morbid Conditions. This worksheet is only a guide for patients (and their local physicians) who are traveling to see an EDS specialist. This guide is not meant to take the place of, or to override the recommendations of one’s primary care physician. The… Continue Reading »

TCAPP Newsletter

Read about our Pediatric Pain Summer Camp, Massachusetts Legislation that May Benefit the Rare Disease Community, & TCAPP’s Successful Polar Plunge. Click here for Newsletter

The Polar Bear Plunge – Click here for video

Here is a short video of TCAPP’s 2015 Polar Plunge in Newport, RI! It was a great time for everyone who ventured out into the cold. Dr. Chopra raised over $1,000 for TCAPP! Thanks to everyone who donated to TCAPP in honor of Dr. Chopra and everyone who came to the Polar Plunge – we appreciate you.

CFS and Related Conditions, Peter C. Rowe, MD.

Author: Peter Rowe, MD Pediatric Internal Medicine Specialist at Johns Hopkins Hospital As a Chronic Fatigue Specialist, this topic will focus on pain and chronic fatigue and multi-faceted disorders that are likely causing it from sleep disorders, to connective tissue disorders, to autoimmune conditions.

Immune system disruption The search for answers

Stanford Medicine By Kris Newby Illustration by Jeffrey Decoster Erin keeps a photo of herself playing soccer in the living room of her tidy cottage near San Francisco Bay. It captures her image frozen in time and space, hurtling like a comet between two opponents, her white-blond ponytail fanned out like flames. “She was a… Continue Reading »

PTSD and Chronic pain

Dealing with chronic illness and navigating the medical system can be extremely stressful on families. When a child has a condition that is not easily recognized, treatment options are not clear-cut, or required modifications are not well understood, it only adds to the pressure.  Sadly, many TCAPP kids have experienced and been diagnosed with post-traumatic… Continue Reading »

Brain attack An explanation for a mental illness that strikes out of the blue

Stanford MedicineBy Erin DigitaleIllustration by Jeffrey Decoster  On March 2, 2009, something snapped inside Paul Michael Nelson. In the middle of the night, his parents found the 7-year-old boy stabbing the door of the family’s home office with a kitchen knife, trying to get at a computer that was off-limits after his bedtime. When they stopped… Continue Reading »

2014 Think Tank Video Introduction

TCAPP is pleased to be able to share with you videos of our 2014 Think Tank that took place last month in Washington DC.  We are hopeful that the information presented by these doctors, many a part of the TCAPP Medical Advisory Board, will bring new insights into medical conditions our TCAPP community is struggling… Continue Reading »

Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all

The Washington PostBy Lillie Lainoff September 12 Lillie Lainoff is a sophomore at Yale University. In 2008, it was all about vampires. In 2011, it was dystopian societies with corrupt governments. And now, 2014 seems to be the year of teenagers with fatal diseases. As far as Hollywood obsessions go, the first two are pretty benign…. Continue Reading »