DM. Sullivan This blog was written in 2017 to channel some grief and try to raise awareness of a growing problem in the rare disease and Ehlers Danlos Community. It hurt too much and felt too scary to publish at the time. Today, as this brave family prepares to release their story on Netflix in… Continue Reading »
TCAPP’S Send A Smile program is a very popular program. We send out gifts, gift cards and/or stuffed animals to children who are having surgery, a medical procedure, or sometimes just to let them know we are thinking of them. If you would like to nominate your child for a “Smile” please send an email… Continue Reading »
Use your voice and share your talent to help TCAPP raise awareness of living life with complex pain. We are currently accepting donations for TCAPP’s From The HeART digital art show and card sale to be launched on #GivingTuesday. This holiday fundraiser will help support TCAPP and the many programs we offer to help kids… Continue Reading »
Rare Daily, by Global Genes (Editor) Ilana Jacqueline is the Managing Editor of The RARE Daily at Global Genes. She assists the patient community… The Greenville, South Carolina native had a unique idea for how to raise funds for her favorite charities. In exchange for a $1000 donation, she would offer companies a complete website… Continue Reading »
The Pain Relief FoundationMarch 11, 2015 Tea Lynn Moore Pain Conditions Introduction Functional Somatic Syndromes, conditions characterized by functional disability and self reported symptoms rather than clearly demonstrable organic problems, are a common contemporary health issue [1]. Each medical subspecialty seems to have at least one somatic syndrome for patients whose symptoms cannot otherwise be… Continue Reading »
PENN State NewsBy Jim Carlson April 14, 2015 Maria Walls knew she would encounter some difficult times when she enrolled at Penn State in 2013. She didn’t know exactly what they would be. She didn’t know when and where they would occur. But the Arlington, Virginia, resident and rehabilitation and human services (RHS) major in… Continue Reading »
The Pendulum, Elon University’s Student News OrganizationBy: Leena Dahal Like any freshman, Maddy Gross began her school year in the fall filled with flurries of nervous, eager anticipation. The only difference was that her heart beat three times faster than everyone else — literally. While her peers were adjusting to college life and preparing for classes… Continue Reading »
Dysautonomia DispatchMarch 2015 There’s a reason no one says that living with a chronic illness is easy: because it isn’t. Living with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, can be especially challenging at times. However, there are ways, with practice, to manage life with dysautonomia and find your own version of normal. One of the… Continue Reading »
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 »
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 »
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 »
What It’s Really Like To Be Chronically Ill By: Laura Anne, thoughtcatolog.com Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to… Continue Reading »
Deborah J. CornwallHuffpost Healthy Living, July 12, 2014 Autonomic disorders, like POTS (Postural Orthostatic Tachycardia Syndrome, sometimes called simply Postural Tachycardia Syndrome) and Neurocardiogenic Syncope involve body systems that are supposed to work automatically — controlling your heartbeat, blood pressure, breathing, thinking, temperature, digestion, vision and more — but don’t work as they should. Such conditions affect between 500,000 and… Continue Reading »
By: Deborah J. CornwallHuffpost Healthy Living, July 12, 2014 Think about your everyday life — how taking a run, or walking your dog on the beach, or socializing with friends are just part of a normal day. How you share daily responsibilities with others. How you set long-term goals and arrange your life to pursue… Continue Reading »
