Even in the most trying circumstances, Caitlin Ronan, a teenager in England, leveraged everything in her power to help others. After several years in the hospital, battling a progressive rare…
This isn't the first time Barry Dubois, host of the Australian cooking show, Living Room, has had cancer. Seven years ago, he was diagnosed with plasmacytoma myeloma. It was different the first…
Although Anabelle, a girl from the Phillipnes, is only seven, she has seen some of darker corners of the world. Just two years ago, she was held captive by a…
Nerves were high last week as the Senate geared up to vote on the bill to overhaul the U.S. tax code. Members of the rare disease community felt particularly vulnerable,…
Happy Friday Patient Worthians! Gotta love that hectic-catch-up-crazy feeling post-Thanksgiving and pre-December holidays! We have heartwarming story of a little girl getting the ultimate gift for the holidays. We also…
Some people with Marfan syndrome look the part. They may be unusually flexible, with long arms, legs, and fingers, and a tall, willowy build. Some patients have scoliosis, crowded teeth,…
Sangamo Therapeutics shared some big news about the search for Mucopolysaccharidosis II (MPS II) treatment. They reported that they have, for the very first time, used experimental in vivo gene therapy to treat…
Shani Dhanda, 31, was at a loss-- she had sent hundreds and hundreds of job applications, and no one even interviewed her. The Birmingham woman stands at 3'10". She was…
Good news for patients with Mucopolysaccharidosis Type VII (MPS VII)! In mid-November, the FDA approved a new drug for treatment of this rare disorder. The drug can be used for…
Everybody responds to treatments differently. The drug, diet, or surgery that successfully helps one person, may have a neutral or even negative effect on another. This is why the medical…
My son Nick has a rare, debilitating, life threatening disease called Lennox-Gastaut Syndrome (LGS). To learn more about LGS, click here. For over 38 years I have been consciously aware…
Trigeminal neuralgia (TN) is the type of disease you wouldn't wish on anyone. It's characterized by extreme pain in the trigeminal nerve, which innervates the face. It's often described as…
Progeria is an incredibly rare genetic condition, where a random mutation causes a person to age rapidly. Progeria patients are essentially young people in the body of someone much older.…
Whenever I'm under a lot of pressure, I daydream about a day off, where I could watch true crime shows, eat pizza in bed, and never get out of my…
Since the birth of industrialization, societies have wrestled with the effects of pollution. Whether it contaminates the air, water, or soil, it can negatively impact human health, and scientists are…
Tourette syndrome (TS) is a rare, and widely misunderstood neurological condition. It causes involuntary vocalizations or movements, which are called tics. This can appear in many forms: repetitive throat clearing…
Alex Pasichnyk is a 12-year-old girl from Canada, who enjoys playing piano and swimming. Last June, her life was suddenly interrupted by a rare disease. Alex has to leave her…
Happy Thanksgiving Patient Worthians! While you're still digesting, take a look at what we have in store for you this week. If you have EDS, we have some exercise tips…
Living with a chronic illness is hard enough. When you have juvenile idiopathic arthritis, you learn to manage pain and health issues at an age when most of your peers…
People find love in endless different ways. Some people meet their romantic partner through dating apps and singles groups, others meet at work or social gatherings. One place you don't…
Even as we advance in science and medicine, human organs are still complicated and largely mysterious. They're affected by lots of external factors, changing with temperature, pH, and access to…
Kallman syndrome is a rare genetic condition that either delays puberty or stops it entirely. Its symptoms include a lack of secondary sex characteristics-- pubic hair that doesn't appear, testes…
Hello, I am Nicole Campanella, 65 years young and I share my body with lupus and now, osteoporosis. My entire life, there were symptoms of lupus or some sort of…
Iasmin Omar Ata's stunning graphic novel, Mis(h)adra, dives into the vibrant, hypnotic world of epilepsy. Although it only came out about a month ago, it has received critical acclaim from…
Epidermolysis bullosa (EB) is a rare disorder, in which a genetic mutation disrupts the production of a protein that holds the skin together. This creates intense and painful blistering externally,…
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