Viktoria Cupay is no stranger to raising awareness about underserved and invisible illnesses. In 2016, two years after she began searching for a diagnosis, Viktoria found out that she was…
When Anna tells me about her diagnosis of Wegener’s granulomatosis just about thirty years ago, she shares that she does all that she can to not allow it to encompass…
When Josh Wright, 13, was younger, he always seemed to be somewhat of a sickly child. His mother Julie remembers Josh's first hospitalization at just one year old; her…
Last year, Mandy Moore, 38, celebrated as she brought her son Gus into the world. Known for her roles in This Is Us, A Walk to Remember, and Saved (among many others), Mandy…
On August 10, 2022, KTVU anchor Leslie Griffith passed away in Lake Chapala, Mexico, where she had been living for the past six years. Leslie was 66 years old…
Don't forget to check out Part 1, where we discussed what multiple sclerosis (MS) is, went over Mo's diagnostic journey, and began talking about the importance of awareness. Treating Multiple Sclerosis…
For as long as she can remember, 30-year-old Ankona “Mo” Das has loved traveling. Traveling has provided a way to break out of her shell, to experience new landscapes, and…
Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…
Don't forget to read Part 1 of our interview, where we discussed what Costello syndrome is, Ryan's son Reynolds' diagnosis, and what spurred the family to want to make a change. mejo…
Before you read on, make sure you take a look at Pt. 1 of our interview, which goes over what PGAP3 is, Lucy's story, and the reasons behind why Zach and Geri…
“My son has Costello syndrome, but he is not defined by his diagnosis,” Ryan Sheedy tells me about his son, Reynolds. To Ryan, his statement exemplifies his beliefs about needed…
Zach and Geri Landman are devoted parents and physicians – a pain specialist and pediatrician, respectively – committed to making the world a better place for those around them. They…
Unfortunately, doctors and scientists are still learning about Zellweger syndrome, a rare multisystem genetic disorder. But this can be incredibly difficult for families whose children are diagnosed – after all,…
Desiree Thompson recently turned three years old – and the Tulsa County Sheriff’s Office (TSCO) planned a big surprise for her. You see, Desiree, who has epilepsy and lissencephaly, absolutely…
As many people in the rare, chronic, or underserved disease community know, the journey to diagnosis can be a long and difficult one. For Texas resident Cheryl Yetz, the diagnostic…
For most of his life, Jack O’Donnell was as healthy as can be. Even as he headed towards Oklahoma State University, ready to study engineering graphics and design drafting, Jack…
Kris and Carla Thompson were so thrilled when they learned that they would be expecting a daughter. When Lucy was first born, Carla describes her as a cheeky, upbeat, and…
When Mercedes Young found out that she was pregnant with her son Milo, she knew that she would do everything possible to protect and support her son. Milo was born…
According to a recent article, a young boy who has been battling biliary atresia and was put on a liver transplant list has made miraculous progress. About Biliary Atresia Biliary…
In 2019, Rian and Mike Fee celebrated the birth of their son Anderson, who they call Andy. Since birth, Andy has always been such a light in the lives…
NBC2 has featured the story of pulmonary fibrosis patient John McDaniel since June. Now, McDaniel has received an incredible gift that will enable him to play his favorite sport…
A recent article highlighted the story of the world’s tallest man Sultan Kösen, in which it was revealed his growth is attributed to pituitary gigantism. Pituitary Gigantism Gigantism, also…
When Caroline Cheung-Yiu's son Alex started to walk around age two, it was clear that he was struggling with his balance and coordination; but instead of improving, his issues started…
Recently a woman was admitted to Odisha hospital where she was successfully treated for her rare blood disorder aplastic anemia. Aplastic Anemia Aplastic anemia is a rare, but serious,…
According to a story from ozarksfirst.com, Jamie Simoson was taken completely by surprise when her three year old son Jonathan started complaining about a headache. As his condition worsened, Jonathan…
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