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 »
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 »
Would you like your doctors to understand more about your child’s complex chronic disease? Invite them to Pain in Pediatrics with Complex Chronic Disease. This one day class with CME’s will be taught by: Timothy Bunchman, MD Professor & Chief of Nephrology and UroRenal Clinic, Virginia Commonwealth University Children’s Hospital of Richmond. Clair A. Francomano,… Continue Reading »
As part of making an educational video, Dr. Barnum (a member of TCAPP’s MAB and a practicing child and adolescent psychiatrist who works with a number of children and teens with persistent complex medical problems) interviewed a half a dozen children and parents while attending TCAPP’s Think Tank. This article stems from those interviews, and… Continue Reading »
