Donate

Tag: rare disease

  • Rare Community Mourns a Mom Pushed Too Far

    —

    in

    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 June, TCAPP stands…

  • When Medicine Attacks Motherhood

    —

    in

    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,…

  • Why Even Fame Can’t Shield Jameela Jamil from the Ugly Truth About Ehlers Danlos Syndrome

    —

    in

    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…

Contact Us: [email protected]

©2024 The Coalition Against Pediatric Pain