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Tag: pediatric pain

  • 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…

  • That Space Between Us

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    You will always be my baby, my child, my soul – you are part of me. Your challenge is my challenge, your illness is my illness, and your pain is my pain. I would give anything to trade places and take what you must endure each day. I would do anything to make all the…

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