When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
Netflix recently released an original dark comedy that features a young boy from the UK with Duchenne Muscular Dystrophy whose caregiver (played by Paul Rudd) is new at his job and…
When one myasthenia gravis (MG) patient musters the strength to get out of the house, she often receives the same compliment: “You look great today.” But because she feels so…
If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…
Parkinson’s disease damages the nervous system, and like other motor system disorders, it affects nearly every facet of life. One of the rarely-discussed symptoms of Parkinson's that can have a…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…
Most people don't think about illnesses or diseases unless they're directly affected. After all, who wants to worry about things that will likely never be a problem? Rare diseases obviously do not get much attention…
Alejandra Carasa arrived in the United States with one suitcase and a thirst for success. Cuban-born Alejandra has been living with T-cell cutaneous lymphoma, also known as mycosis fungoides (MF), since 1999. MF…
Julia Smith was diagnosed with Glanzmann thrombasthenia (GT) at the tender young age of six months through a series of fortunate events. First, her mother Helen, noticed her infant bruised very…
When Gina Walker's son spoke his first words, she broke down and cried. Not that the words, "Hello, Mom," were so revolutionary; she cried because James was 16 and it…
There are 30 million people in America with a rare disease. That is about 1 in 10, or 10%, of the population. Keep on fighting the good fight, every post…
"Hardships often prepare ordinary people for an extraordinary destiny." -C.S. Lewis People with rare diseases are not ordinary people. The hardships they endure turn them into extraordinary individuals because they…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
If you think about the definition of rare, you realize just how accurately it describes people with rare diseases. You are one in a million and you are precious to…
People with ankylosing spondylitis (AS) already have a lot on their plates trying to cope with the symptoms of this inflammatory disorder that mainly affects the spine. In severe cases, vertebrae…
“She had blue skin, And so did he. He kept it hid And so did she. They searched for blue Their whole life through, Then passed right by- And never…
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…
Píldoras y Parfaits: ¿Cómo probióticos podrían hacer la vida con CVID un poco más fácil. Entre las infecciones lejos demasiado frecuentes asociados con ICV y los problemas gastrointestinales recurrentes, muchos…
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
I hate the sound of the word “lesion.” I think it ranks right up there with the word “moist” in icky-ness. And I’m willing to guess men with axial spondyloarthritis…
Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…
On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
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