A bird? A plane? It’s Super Moms with Sickle Cell Anemia!
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A bird? A plane? It’s Super Moms with Sickle Cell Anemia!

Leathia Boyd is a 38-year-old woman, mother, and wife living with sickle cell anemia. She's also an advocate and has been one for more than six years. It all started when she joined…

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After Being Paralyzed For 10 Weeks, a Guillain-Barre Syndrome Patient Will Walk Again
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After Being Paralyzed For 10 Weeks, a Guillain-Barre Syndrome Patient Will Walk Again

Dancers have amazing muscle control. Through hard work and practice, they learn to make the tiniest movements precisely. So imagine the terror former dancer Emily Thompson, then only 20, felt…

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Transverse Myelitis Diagnosed a Month After Hospital Visit
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Transverse Myelitis Diagnosed a Month After Hospital Visit

Kyrus Rogers a former security guard was supposedly misdiagnosed when an emergency room physician apparently failed to run diagnostics for transverse myelitis (TM). Rogers, once a healthy, athletic 30-something, is…

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Is There a Possible Link Between the Zika Virus and Guillain-Barre Syndrome?
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Is There a Possible Link Between the Zika Virus and Guillain-Barre Syndrome?

Guillain-Barre Syndrome is a rare disorder that attacks the body’s nervous system. For anyone who has gotten Guillain-Barre Syndrome, the symptoms begin swiftly. It causes paralysis and symptoms typically begin…

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Right-to-try Laws Give Last Minute Hope for Spinal Muscular Atrophy
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Right-to-try Laws Give Last Minute Hope for Spinal Muscular Atrophy

Shortly after celebrating baby Eli’s birth, his family got the shocking news that Eli had a fatal disease called spinal muscular atrophy (SMA). Spinal muscular atrophy can take away Eli’s…

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Can Nutrition Cure Sickle Cell Anemia? The Nigerian Government Thinks So
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Can Nutrition Cure Sickle Cell Anemia? The Nigerian Government Thinks So

According to recent research, the Nigerian federal government believes nutrition is another way to approach treating and potentially curing Sickle Cell Anemia. Dr. Ogbonnaya Onu, Minister of Science and Technology, explained…

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A Patriotic Man Returns to Running a Marathon After Trigeminal Neuralgia Brain Surgery
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A Patriotic Man Returns to Running a Marathon After Trigeminal Neuralgia Brain Surgery

This year, there were about 5,000 runners in the Myrtle Beach Marathon. Trigeminal neuralgia (TN) didn't stop Greenville, North Carolina’s Melvin Coleman from being among those who ran relay races,…

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This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia
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This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia

Leah Alstin has a rare disease called Friedreich’s ataxia. Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms…

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ACA Changes Could Screw Over This Woman with Ankylosing Spondylitis
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ACA Changes Could Screw Over This Woman with Ankylosing Spondylitis

Charis Hill believes that changes to the Affordable Care Act (ACA) may be the difference between living and dying. Charis currently gets insurance due to the ACA. She is worried…

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High School Senior With Friedreich’s Ataxia Fulfills Cheerleading Dream
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High School Senior With Friedreich’s Ataxia Fulfills Cheerleading Dream

Kiara Trussell thought her dreams of being a cheerleader would never happen. This is partly because Friedreich’s ataxia has made her wheelchair bound. Friedreich’s ataxia is a progressive neurological condition.…

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Teens with Von Willebrand and Other Bleeding Disorders Take to the Runway
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Teens with Von Willebrand and Other Bleeding Disorders Take to the Runway

Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was one of the models for the…

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The Importance of Storytelling: A Journalist’s View of Trigeminal Neuraliga
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The Importance of Storytelling: A Journalist’s View of Trigeminal Neuraliga

Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the years, she has interviewed people…

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Woman Runs Multiple Marathons to Support Her Best Friend and Benefit SMA
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Woman Runs Multiple Marathons to Support Her Best Friend and Benefit SMA

Katie and Nataleigh have been best friends since the age of three. Last July, a difficult diagnosis would bring these close friends even closer. In July, Nataleigh had a son, Laigan.…

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Woman Living with Tourette’s Frustrated by Lack of Job Opportunities
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Woman Living with Tourette’s Frustrated by Lack of Job Opportunities

Eryn Gaffney, now 20, was diagnosed with Tourette syndrome at the age of nine. Tourette syndrome occurs as a result of the basal ganglia misfiring. This is the part of…

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You Won’t Believe Mary’s Athletic Prowess with Ankylosing Spondylitis
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You Won’t Believe Mary’s Athletic Prowess with Ankylosing Spondylitis

High school senior, Mary Lacy Lusk has ankylosing spondylitis (AS). For those who might not know, ankylosing spondylitis is a rare autoimmune disorder that is similar to rheumatoid arthritis. Mary states…

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