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 »
When a child has Complex Regional Pain Syndrome, keeping them active and socially plugged in is an important strategy for emotional wellness. However, it can also be one of the more difficult, if not sometimes impossible things to do. Who wants to go out or make conversation when you feel like your limb is on… Continue Reading »
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 »
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
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.
Like the last 3 years, Dr. Pradeep Chopra will lead the plunge for TCAPP in Newport, RI and we’ll be there to videotape Dr. Chopra and one of our TCAPP kids, Karen Richards, do the polar bear plunge in honor of TCAPP and all those that suffer from chronic pain conditions. The Polar Bear Plunge… Continue Reading »
That most wonderful time of the year is upon us. The frantic frenzy of holiday shoppers, and manic mamas digging deep, forgoing sleep with baking, and picture taking, and decorating and finding new and outrageous things to do with that Elf on A Shelf. What I wouldn’t give to be part of that madness. Yet… Continue Reading »
The Coalition Against Pediatric Pain (TCAPP), RSDSA, and the US Pain Foundation have partnered with The Center for Courageous Kids in Kentucky and have pooled all of our resources to create a camp for kids in pain. This will be a family camp that will take place at The Center for Courageous Kids in Scottsville, Kentucky… Continue Reading »
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.
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 »
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 »
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 »
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 »
Your body isn’t you. Your soul is you and they can never cut into your soul. Leo, The Red Band Society FOX recently launched it’s new teen medical drama The Red Band Society. My daughter and I watched with great anticipation, because like many TCAPP families, we have spent much of her adolescence in hospitals… Continue Reading »
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 »