News & Events

Why NBC Failed The Mito Community – TWICE!

Dear NBC It is beyond ironic that you would choose Rare Disease Month to insult families living with the rare condition, Mitochondrial disease. The Mito Community watched Chicago Med last night, with great hope, that you might help to raise awareness of the devastating effects of this complex, disabling, and sometimes fatal disease that impacts… Continue Reading »

Chronic Illness VS Senior Year

Senior year, or as I was going to call it, “Year of Michaela”. After all I’ve contended with in the past, I figure I finally deserve a good year. And it was really setting up to be a great year too. I’m in so many amazing classes. Newspaper production (!!!!!), AP Psychology (isn’t that ironic… Continue Reading »

Finding The Light

By Michaela Sullivan Over the years, many people have said to me, “There’s always a light at the end of the tunnel”. But what I want to know is, what happens when there’s no end to the tunnel? If you have a lifelong chronic illness, you’re eternally damned to that tunnel.  So you have to find light… 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 »

Elevator Girl

By Michaela Sullivan As a teenager, all I want is to be normal. As a teenager living with Ehlers Danlos Syndrome and Scoliosis, my life is anything but normal. Have you ever heard the saying “Why fit in because you were born to stand out”? Unfortunately, it’s true. While I’d like nothing more than to… 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 »

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 »