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 »
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 »
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 »
While most of us that are familiar with EDS wish it was as entertaining as the book Fifty Shades of Grey, one thing we can all agree on is that it can be just as controversial with all of the real shades of grey we find ourselves wading through. With proper diagnosis often taking years,… 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 »
By DM Sullivan When a child is born, so is a mother. I remember feeling as though my heart would burst snuggling with my sweet smelling newborns in a haze of pure joy, exhaustion and newfound insecurity that comes with the realization that you are now responsible for another human being. It’s the most important job… 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 »
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 »
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 »
FEBRUARY 28TH IS RARE DISEASE DAY. In Washington DC and all around the world events have been taking place as advocates, physicians, patients and policy makers meet to talk about Rare. Support groups are hosting events and people are sharing their stories in the hope of shining a spotlight on the many lesser-known diseases that… Continue Reading »
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 »
