News & Events

When Medicine Attacks Motherhood

mom comforting child

By. DM Sullivan My phone has been blowing up all week. It happens every May. This year it seems to be a little more intense, but I know the reason – Mother’s Day. I am a rare disease mom and patient advocate. I have spent the last ten years supporting families who live with rare,… Continue Reading »

Why Even Fame Can’t Shield Jameela Jamil From The Ugly Truth About Ehlers Danlos Syndrome

By DM Sullivan  2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts. EDS suddenly went from “what?” to the “disease du jour” and was all over social media and pop culture news programs like Entertainment… Continue Reading »

Why Complex Medical Families Are Grateful To Justina

By DM Sullivan This week, the long-delayed Justina Pelletier lawsuit goes to court.  Rare disease and complex medical families are watching very closely because since 2013 when Justina was taken into state custody after a disagreement between her parents and doctors at Boston Children’s Hospital, things have seemed to get worse not better. Rare disease… Continue Reading »

Dr. Chopra’s Annual New Years Polar Plunge For TCAPP Kids

Taking the Plunge to Benefit Pediatric Pain: A Doctor’s New Year’s Ritual Raises Awareness On The Plight Of Young Pain Patients. Every New Year’s Day, as large and spirited crowds run toward the frigid ocean waters in Newport, Rhode Island, one man’s jump is especially meaningful. Pradeep Chopra, MD, is a Rhode Island pain physician… Continue Reading »

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 »