In 2018, Ethan Lambert was born. His parents, Kassondra and William, were thrilled with the new addition to their family. For the first year, Ethan seemed to be developing fairly…
Maria’s message is: “when in doubt, get a biopsy." Ten years ago, Maria Sylvia noticed a vertical streak on her thumbnail that at the time she thought was “cool." She…
Eric is 35 years old and has been living with a chronic rare illness for around 20 years: membranous nephropathy. When he was a teen, he noticed that his legs…
Rise is a nonprofit organization that gives support to the disabled. Its services include rides by Lyft, the popular ride-sharing company. The funds are then reimbursed by their riders’ Medicaid…
Acute myeloid leukemia (AML) is a cancer of the bone marrow and blood. It spreads rapidly. Therefore precise and swift treatment is critical. In a recent interview with Medical Life…
In 2020, Tyrese Dibba wanted to make a change for those who were Deaf and hard-of-hearing. Tyrese himself is Deaf and also has partial vision loss, resulting from his CHARGE…
Nelson Ambrogio had always looked up to his older brother, Daniel. He has many positive memories of growing up with him. They both shared a passion for soccer, and Nelson…
If you have not heard of craniosynostosis, it is understandable, as the disorder affects only one infant out of approximately 2500. A recent article published in the Washington News…
According to a story from Rolling Stone, iconic comedian Gilbert Gottfried has passed away from complications related to myotonic dystrophy type II, a rare disease. His publicist disclosed his cause…
Make sure to check out Part 1 of our interview with Dan Pezzetta, an advocate for the rare disease and chronic illness communities. In Part 1, we dug into Dan's…
The rarity of certain diseases often stops them from having numerous treatment options, and the variability of patient experiences makes it so that each option does not necessarily work for…
At 22 years old, Dan Pezzetta is carving out a name for himself in the chronic illness sphere. When he was born, Dan was diagnosed with aortic stenosis. Although intervention…
Celia Grace, a metachromatic leukodystrophy (MLD) patient from Alabama, has recently made history in Minnesota - and she's just five years old! Celia recently underwent an investigational gene therapy to…
25-year-old Grace Strobel is a boundary-breaker. A few years ago, she and her mother began sharing her story at schools or through speeches. You see, Grace has Down syndrome, meaning…
Over recent weeks, stories have emerged regarding the frightening situation in Ukraine. People have lost their lives, their homes, and their sources of income. So what happens to those like…
Marine Corps values include abiding by a code of integrity, respecting others, and respecting human dignity. For veteran John Rubino, this code of conduct helps shape the way he lives…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
An article recently highlighted the stories of young patients with Ehlers-Danlos syndrome and how they are taking their diagnoses to spearhead research about the rare disease. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos…
Roger Bliss, 68-year-old pulmonary hypertension (PH) patient, was diagnosed with chronic lymphocytic leukemia and small lymphocytic lymphoma. In addition, Roger has celiac disease. He recently interviewed with Pulmonary Hypertension News.…
When Melinda Jansen van Vuuren was 13 years old, she began smoking cigarettes. For years after, Melinda smoked up to 15 cigarettes daily. Although she has since quit smoking, Melinda…
Munique Slongo is a rare disease patient diagnosed with Fabry disease. She has taken the time to share her story about what life with this diagnosis has been like. Fabry…
Often, one's own experiences inspire them to advocate for a certain cause. Abbey Hauser is an example, as she has become a voice for young adults within the rare disease…
At first, 34-year-old Chris Mee wasn’t too worried about his back pain. In fact, he kind of brushed it off – thinking it could just be sciatica, or aching from…
Amanda Gilpin, a resident of Karratha in Western Australia, noticed that her little daughter occasionally would roll her eyes in response to some of her motherly advice. At times, she…
Chloe Goodman is no stranger to tough situations. As a model and reality TV star from MTV UK's Ex on the Beach, Chloe has certainly found herself in stressful environments. But…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
