Whenever I was looking for something I had lost as a kid, my mom would offer the same, unhelpful advice: It'll show up in the last place you look for…
Welcome Back Patient Worthians! This week, we have stories of brave patients and caregivers who run, march, and make innovative steps to reach recovery. A young girl marches after her…
Rett syndrome is a severe, genetic neurological disorder, which primarily affects girls. While it was once thought to be a form of autism, it's now understood as its own condition.…
Imagine waking up one morning feeling pain shoot all over your body. It seems like it's out of nowhere. When you try to move your neck, it will barely budge.…
Canavan disease is an isolating condition. It's a rare disorder caused by a genetic mutation that can be passed on in families. It damages nerve cells, so they're not able…
Amir Khan is one of the leading athletes from Singapore. He competes in mixed martial arts, and has made a name for himself in ONE Championship. He's tough, fast, and…
African Americans face a far higher danger of developing multiple myeloma-- especially African American men, who run three times the risk of a diagnosis. These groups are also about half…
Fourteen years ago, Sabrina "Bria" Baumann's mother, Sophia, saw a mass growing in a sonogram. Something was wrong. Whatever was growing was on her chest and her neck, and the…
The story starts with Cheryl and Sharik Peck, a couple in Richmond, Virginia. It was an oddly convenient pairing: Cheryl dealt with chronic pain, and Sharik, a physical therapist, worked…
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…
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