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…
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…
Wilson disease is a rare genetic disorder. What does it cause? Well, copper begins to build up in the liver and brain, sometimes to a dangerous degree. One young boy in India…
Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
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…
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…
Homocystinuria is an extremely rare disorder. It is estimated that only 1 in 344,000 people in the world have it. Homocystinuria is a genetically inherited. This means the child’s parents…
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…
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…
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,…
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…
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…
Sam Edwards was always exhausted. No matter how many hours of sleep he would get, he just could not stay awake. But as a professional race car driver, he needed…
About 1 in 3,000 babies are born with gastroschisis every year. Elliotte Sargent was born in September 2016 and is one of those babies. While in the womb, she was…
The coaches noticed teenager Amaris Tyynismaa during a 5K race as she ran past some of best distance runners in the South. They admired her long strides as she ran faster than…
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.…
Tamara is a wife, mother of two, personal trainer, yoga instructor, nutrition coach, and a blogger. Furthermore, she shares her story about having Guillain–Barré Syndrome. When Tamara received her Guillain–Barré Syndrome…
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…
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…
About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if not treated. Almost every family…
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.…
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…
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…
Bethany Barber is a Virginia native living with sickle cell anemia who has dreams of making it big as a model. She goes on daily castings, as modeling is her main…
Carl Rooney has seen everything SMA Support UK has done for his younger brother, Daniel. That's why he's running 2,107 miles. Carl is from an English town called St. Ives, and…
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