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 »
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 email… Continue Reading »
What is Sickle Cell Disease? Sickle cell disease affects nearly 100,000 Americans. More specifically, sickle cell disease occurs in 1 out of every 365 Black American births. Also, 1 in every 13 Black babies are born with sickle cell trait. Approximately 8% of Black Americans are directly affected by sickle cell disease; the percentage is… Continue Reading »
When I close my eyes: By Lexi Uslu When I close my eyes, I grow wings and fly; I use my wings to fly towards the sky. I abandon my reality of chronic illness as I soar towards freedom. Tonight, I am safe in my bed – away from it all… Away from my dreaded wheelchair… Continue Reading »
By Lexi Uslu I plunged into the deep dark depths of disparity that is chronic illness early on in my life. It didn’t take me long to realize I was different than all of my peers. The casts, the wheelchair, the trashcan next to my desk that was constantly in use due to my upset… Continue Reading »
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 »
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 »
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 »
Congratulations To Katherine Herbert of Washington DC! We wish Katherine all the best in her academic endeavors and thank her for all she does to give back to the complex pain community. We also sincerely thank everyone who submitted an application and extend our love and gratitude to the Bernard Family. I have had chronic… Continue Reading »
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 »
Use your voice and share your talent to help TCAPP raise awareness of living life with complex pain. We are currently accepting donations for TCAPP’s From The HeART digital art show and card sale to be launched on #GivingTuesday. This holiday fundraiser will help support TCAPP and the many programs we offer to help kids… Continue Reading »
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 »
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 »
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 »
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 »
