Every day, Jackson Garwood’s parents, Darren and Rebecca, look at him and smile. There were points when they didn’t expect to have their son for this long. You see, Jackson…
According to a story from Buzzfeed News, Comedian Sandy Honig, best known for writing and starring in Three Busy Debras, was recently diagnosed with gastroparesis, a rare disease that impacts…
Before you read, make sure you check out Parts 1 and 2 of our interview. In Part 1, we discussed what Wegener's granulomatosis (GPA) is, Anna's diagnostic journey, and her first episode of symptoms.…
Don't forget to read Part 1 of our interview, where we discuss what Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are, and learn more about how Viktoria ended up hospitalized. Today,…
Ally and Jake Shaw always dreamed of having a big, happy family. The pair began their journey with their daughter Nala, now just under 3 years old, and later brought…
Before you read any further, make sure you've read Part 1 of our interview, where Anna and I discussed what Wegener's granulomatosis (GPA) is, her diagnostic journey, and how she managed her…
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…
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