According to a recent article, a little boy’s parents are bringing awareness to the rare genetic disorder called uncombable hair syndrome after he was diagnosed at just 14 months old.…
According to a recent article, a Vietnam veteran is spreading awareness about the struggles of accessibility for treatments for his rare genetic disease alpha-1 antitrypsin deficiency (A1AD). Alpha-1 Antitrypsin Deficiency…
In 2016, Marley Berthold was born. But doctors, and her parents, noticed some concerning signs. Marley's silver hair had fallen out in clumps; she had macrocephaly (an abnormally large head)…
Nobody wants to get sick on vacation; it can ruin a time meant to be fun and relaxing. Unfortunately, Kai McCulloch, a 13-year-old from Scotland, experienced this firsthand. They were…
According to a recent article, a young girl’s struggle with mitochondrial disease has led to a mitochondrial donation bill finally being brought to vote in Parliament in Australia. Mitochondrial Diseases…
10-year-old Lyla McCarty has always dreamed of owning her own bakery. You see, Lyla has complex regional pain syndrome (CRPS) and often experiences periods of prolonged and intense pain. But…
Jon Aquino, a thirty-seven-year-old nurse, and his family were on vacation in New Jersey last August when he became seriously ill. Jon was immediately rushed to a Camden, New Jersey…
Kaelyn Franco was an experienced athlete by the time she entered college, and a friend recommended taking a spin class. According to an article in Yahoo, 23-year-old Kaelyn took her…
In April 2020, Elly Hawkins, a mother of three who currently lives in Queensland, Australia, began experiencing some odd symptoms. At first, the 35-year-old woke up with extreme vertigo. It…
In the first part of the "Save Our Medicine" series, you met moms Tiffany, DeAnna, and Sara, who are working to make a change and save experimental medication access for…
In a recent article from Porphyria News, Claire Richmond describes how she lives with acute hepatic porphyria (AHP), a rare disease that requires long-term management. Acute Hepatic Porphyria (AHP)…
For Part 2 of "Save Our Medicine," we continue talking with Tiffany, DeAnna, and Sara about their families' NPC journeys, as well as the push for medication access. If you…
To learn more about Rachael's story, Niemann-Pick type C (NPC) symptoms, the diagnostic process, and how her mother Debbie found and offered support to other families, take a look at Parts…
Jo Traunter was told that she was "a bleeder" throughout her life, whether it was by family, doctors, or others. She earned this title after living through decades of heavy…
If your child was sick and there was a real, viable treatment option, the next step seems pretty straightforward: pursuing that option. But what if it wasn’t that easy? What…
In Part 1 of Rachael's story, I spoke with her mother Debbie about what Niemann-Pick type C (NPC) is, the beginning of the diagnostic journey, and how Dr. Behar helped…
“Hi, I’m Rachael, and I’m forever 33.” When Debbie Kaflowitz remembers her daughter, she thinks about everything that Rachael loved to do. Rachael enjoyed dancing and performing in ballet recitals,…
Nancy Green and Judi Beckerleg first met nearly 22 years ago in 1999. After Judi moved to Arizona, she began working as an aide in Nancy's classroom, where Nancy taught…
A recent article from The Sun told the story of how a husband was forced to make an impossible choice between his wife and unborn child after she prematurely…
A recent article highlighted the fact that November is carcinoid cancer month and is helping spread awareness about the disease in the hopes of earlier diagnosis. Carcinoid Syndrome Carcinoid syndrome…
A Tyler, Tx artist, mother, wife, and friend has her community rallying behind her in her fight against oligodendroglioma, a primary central nervous system cancer. According to the Tyler Morning…
When she was just nine years old, Maika Ting, from California, was diagnosed with aplastic anemia, a rare and serious blood disorder. Although her brother was a bone marrow match,…
3-year-old Ruby Ann Grimes is bubbly, happy, and loving. But each and every day, Ruby faces an ongoing battle: Opsoclonus-Myoclonus syndrome (OMS). Last January (2020), Ruby was first diagnosed with…
“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…
Written by Rod Cisneros Like many people, I keep a daily journal. I use it to document my everyday thoughts and I even include advice for family members who might…
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