Angela Davis is a rare disease writer and advocate. She was published in last year’s congressional press release to support and fight for the ultimate passage of Cures Now, and she has 16 published pieces on The Mighty. She is also a published fiction writer and is working on her first novel every time her disease permits. Her pieces on rare disease have been shared by prominent organizations such as Global Genes and NORD. Once a busy writer, Angela grew progressively debilitated over 22 years with the rarest 20% of a rare neuromuscular disease, Stiff Person Syndrome, which affects one in a million and has no effective treatment or cure. She lives and battles for medical care in Bar Harbor, Maine with her devoted husband, Devin. They have one sassy rescue cat named Maeve. After care at UCLA Neuromuscular Clinic and Johns Hopkins, Angela is now without any specialist attention since she has exhausted help from top rare neurological doctors in the USA. Angela’s Twitter: @DavisAngesdavis, Facebook: angela.s.davis.37
Sunday, March 15, 2020 was the sixth International Stiff Person Syndrome (SPS) Awareness Day. The patients who often are forgotten on this day of awareness are the rarest, most severely…
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The Rarest Patients on This Sixth International SPS Awareness Day
I almost died at birth and had to wear metal leg braces and shoes for the first two years of my life, an attempt to straighten my inward facing rigid…
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I was a Rare Disease Baby, Now a Rare Disease Adult
I contacted my specialist and he hunted down my primary's email from her office staff. She never replied to his email. When I called her office again to inquire as…
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What Does it Take to Get Treated for Rare Disease? Part 2
Dear Primary Care Clinics, Rare Disease Warriors Are Not Pariahs; We Are Your Patients. -From a SPS Fighter As a rare neuromuscular disease patient, who fought 21 years for a…
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What Does it Take to Get Treated for Rare Disease?