News & Events

Our First Year At Camp

For the last two years, Sue and Aurora reached out to me and asked if my son would like to attend Summer Camp at CCK. The careless fun of childhood and socially active teen years are some of the first casualties in a sting of losses for these kids who live day to day, in… Continue Reading »

The Biggest Lesson That I Learned

By Michaela Sullivan May is Ehlers Danlos Awareness Month. As everyone with a chronic illness knows, one of the hardest things is that you never know what the next day will bring. It could be a great, low pain day or a terrible day where you can’t even leave your bed because the pain is so… Continue Reading »

Why Grey’s Anatomy Did Not Blow The Ehlers Danlos Episode

By DM. Sullivan ABC’s medical drama Grey’s Anatomy’s recently aired an episode, Falling Slowly, which featured a story line about a young patient with Ehlers Danlos Syndrome, and a grateful EDS Community has been abuzz on social media ever since. Thank you for finally giving us a voice! Validation at last! Awareness! Well, sort of……. Continue Reading »

Taking Chronic Illness To College

By Michaela Sullivan College is a chance to start fresh. For most teens, you’re going to a place where very few people know personal details about you. You start your first semester as a freshman, and you have a clean slate. For some, this is good. The mistakes made in high school don’t follow them…. Continue Reading »

My Biggest Accomplishment

By Felicitas Tschurtschenthaler My whole world shattered into thousand little pieces when I became sick on October­ 3, ­ 2010. Little did I know at that time that a sprained ankle would take over my whole life within a matter of days when I developed Complex Regional Pain Syndrome. Soon after that, I entered a… Continue Reading »

The Calm AFTER The Storm

By Michaela Sullivan Almost everyone has heard or will use the expression “the calm before the storm” at some point in their lifetime. It’s a popular idiom, used to illustrate the moments before chaos ensues. But what about the calm after the storm? The strange feeling of Zen that comes across you when a disaster is over,… Continue Reading »

What A Patient Advocate And Medical Ethicist Wants NBC To Know

To The NBC Television Network, As a patient advocate and medical ethicist that works with patients in the Mitochondrial Diseases community, I am writing to express my extreme concern and dismay regarding the “Chicago Med” episode that aired last night of February 2, 2016, on your network. This episode covered a patient who presented with… Continue Reading »

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 »