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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,…
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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…
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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…
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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…
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What a Patient Advocate and Medical Ethicist Wants NBC to Know
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To The NBC Television Network, As a patient advocate and medical ethicist that works with patients in the Mitochondrial Diseases community, I am writing to express my extreme concern and dismay regarding the “Chicago Med” episode that aired last night of February 2, 2016, on your network. This episode covered a patient who presented with a diagnosis…
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Why NBC Failed the Mito Community – TWICE!
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Dear NBC It is beyond ironic that you would choose Rare Disease Month to insult families living with the rare condition, Mitochondrial disease. The Mito Community watched Chicago Med last night, with great hope, that you might help to raise awareness of the devastating effects of this complex, disabling, and sometimes fatal disease that impacts an…
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Why Child Abuse Allegations and Ehlers Danlos Syndrome can Create 50 Shades of Grey
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While most of us that are familiar with EDS wish it was as entertaining as the book Fifty Shades of Grey, one thing we can all agree on is that it can be just as controversial with all of the real shades of grey we find ourselves wading through. With proper diagnosis often taking years,…
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Why My Kid’s Chronic Illness Makes Me Grateful to Moms I Have Never Met
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By DM Sullivan When a child is born, so is a mother. I remember feeling as though my heart would burst snuggling with my sweet smelling newborns in a haze of pure joy, exhaustion and newfound insecurity that comes with the realization that you are now responsible for another human being. It’s the most important job…
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You Can’t Touch This! Easing Social Anxiety for Kids Living with CRPS
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When a child has Complex Regional Pain Syndrome, keeping them active and socially plugged in is an important strategy for emotional wellness. However, it can also be one of the more difficult, if not sometimes impossible things to do. Who wants to go out or make conversation when you feel like your limb is on…
Parents Talk Blog
Would You Like to Guest Blog?
Welcome to our new blog, Parents Talk! Since there is no manual for how to parent a child in chronic pain, or how to navigate the sometimes seemingly endless abyss of physical and emotional challenges, we have created this space to explore and discuss the unique parenting and family issues that so many of us face. We are not experts, just parents like you, who hope that by sharing experiences and discussing strategies we might spark ideas and provide insights on new ways to help our kids.
We invite you to submit ideas for topics or parenting challenges that you would like to explore. We also welcome guest bloggers, so if you have an area of expertise, or topic that you would like to write about, please feel free to contact us at [email protected].
