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Tag: Ehlers Danlos Syndrome

  • Rare Community Mourns a Mom Pushed Too Far

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    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…

  • Growing Up Sick

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    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…

  • When Medicine Attacks Motherhood

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    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

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    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…

  • Why Complex Medical Families are Grateful to Justina

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    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…

  • Why Grey’s Anatomy Did Not Blow the Ehlers Danlos Episode

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    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…. Reviews have been…

  • Paving the Way! Back to School for Kids in Pain

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    When a child is living with pain and chronic health issues, back to school can be a time of mixed emotions and added logistics for parents to navigate. Back To School Means Time To Advocate I woke up this morning, ignored the pit in my stomach and made THAT call. You know, the call to…

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