Rare Community Mourns a Mom Pushed Too Far

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 »

Send A Smile Recipients

  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… Continue Reading »

Teen’s Unique Web-Design Fundraising Strategy Aids Companies and Nonprofits

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 »

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

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 »

Social media awareness campaign fosters visibility and acceptance for POTS

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 »

A Balancing Act

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 »

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 »

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 »

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 »

What It’s Really Like To Be Chronically Ill

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 »

Making Hope When the Medical System Can’t (Part 2)

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 »

Invisible Illness: How to Sustain Hope?

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 »