“E-Something”: Abby’s Sudden Inability to Swallow Leads to a Clear Diagnosis

Abby, only 13 years old, has managed to live with a serious, ever-changing medical condition (in addition to adolescence) with maturity, bravery and humor.

Eosinophilic Esophagitis….it’s a mouthful. For a while, my daughter called it “E-something” when trying to explain to others about her … [more here...]

What is Epilepsy? And Seizure First Aid

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More than three million people in the United States suffer from epilepsy at an estimated cost of 15.5 billion annually. In the United States, more … [more here...]

Tarlov Cysts Disease Patient, Stacey, Gives an Update

Stacey, with the assistance of doctors and Senators, is trying to secure SSDI.

Read Stacey's Original Story Here. Hello to those who suffer from this horrible, debilitating and painful disease. My update since I posted last … [more here...]

ACTION ALERT: Ask Your Member of Congress to Join the Rare Disease Congressional Caucus!

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Help us strengthen the rare disease community's voice on Capitol Hill by taking three minutes to ask your member of Congress to join the Rare Disease … [more here...]

Ehlers Danlos Syndrome 6 Spells Multiple Problems for Dagmara

Diagnosed in her mid-thirties, Dagmara has shocked doctors.

I have Ehlers-Danlos syndrome. One name. A thousand problems. It started when I was born. The doctors said I was a "floppy" baby--which … [more here...]

Sequestration to Cut NIH Budget

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NIH Budget Sequestration Cuts Impact The National Institutes of Health (NIH) has published figures detailing how dramatically the federal budget … [more here...]

Abby’s Journey: Defying the Odds and Choosing Joy

Since decannulation, Abby has been amazing her family with her progress.

I first wrote about Abby here.   I was encouraged to give an update about Abby because so much has happened since this was published in August! On … [more here...]