I’ll admit that I ran wild as a kid. I never got into trouble—you know what I mean, I was never arrested, no animals were harmed, and no injuries were…
Everybody wants to win. Winning gives a certain pride and joy that keeps us wanting more. Winning becomes a motivating factor for a person to do her best so she…
Once upon a time there were three young brothers, and SPOILER ALERT- this part of the story, unfortunately, does not have a happy ending. Each brother suffered: Each had chronic…
Hey, do you guys remember that Mark Wahlberg movie that came out not long ago? You know, the one where he’s a cop? No no, not that one. The serious…
My freshman year of high school, I began to get strange, red spots on my body. They initially developed on my arms, but within a couple of days, they had…
Peter Sadler has been raising funds to support the British Lung Foundation, which funds sarcoidosis research. The 42-year-old recently participated in the Bath-Half marathon. He's been on a mission to run in the…
There is a must-read for more inspiration about living with sickle cell anemia (SCA) – a young woman’s blog, but not just any blog. She’s a DIVA (as in, absolutely…
“Whoever you are, I have always depended on the kindness of strangers.” Blanche DuBois may as well have delivered this as a tagline for every charitable organization in the world.…
Recently, when another rare mother and I were discussing the many trials that rare disease families face, we agreed that we wished that the general public would understand how vulnerable…
I recently wrote about an 11-year-old Canadian girl who has an extremely rare disease called rapid-onset obesity with hypoventilation, hypothalmic dysfunction and autonomic dysregulation, or ROHHAD. There are roughly 100…
Alexander Davis is from Tipton, Indiana. He has been living with spinal muscular atrophy (SMA). SMA prevents him from moving much and he is unable to walk. Therefore, he needs extra…
Elly Mayday, model, is teaming up with Adam Lawrence, filmmaker, to spread awareness and support for those affected by ovarian cancer. Elly was diagnosed with stage 3 ovarian cancer just…
Attitude is one of the most important elements of bringing together “who you are” with “what you do.” Attitude may not be everything, but it’s important enough that nothing else…
Type 0 is the worse type of spinal muscular atrophy (SMA). Fetuses that have this severe form of SMA typically die within the womb. A newborn can likely survive up…
Hannah Hawkins has an autoimmune disorder called transverse myelitis. She has to go to physical therapy multiple times each week to help her walk. Using a crutch is the norm…
In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy asked members of the Charcot-Marie Tooth (CMT) community to tell us their stories, in hopes of inspiring everyone in the rare community…
Think all those fundraising walks you see advertised don't help? Think again! Shelly Meitzer, the mother of two children with tuberous sclerosis complex (TSC), a rare multi-system genetic disorder, has…
Until recently, the term ROHHAD meant nothing to me. But, then, I heard about an 11-year-old Canadian child named Denika Bailey who has this rare disorder. The letters stand for:…
Hemiplegia normally occurs during pregnancy, or very quickly after birth. Parents are lucky to get a few moments with their child before this condition changes all of their lives forever.…
People with Addison's disease often appear just fine on the outside, but on the inside, it's another story. Why? Just above the kidneys are two hormone-producing glands called the adrenal…
Von Willebrand disease (VWD) is a rare disease that affects up to 1% of the population in the United States. It occurs when the blood is missing an essential protein…
It all started when Romy felt that her health was growing worse after having back surgery. She believed that something was wrong, but her doctors assure her the surgery was successful.…
Joe Beernink has a blog describing his experience with Guillain-Barré Syndrome (GBS). More than three years ago, he wrote about his recovery and his healing process. He was told that the recovery…
Jim and Kristen Farrell have two children, Braeden and Kernan, both of whom have a progressive muscle-wasting disorder called spinal muscular atrophy (SMA). The disorder can take away a child’s…
When you have a bleeding disorder, you have to be careful doing everyday tasks. It changes your normal routine. It changes your life. For Malaika, her diagnosis of hypoprothrombinemia took…
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