In my opinion, Sam Berns is the face of progeria. I first saw his inspirational Ted Talk, “My philosophy for a happy life,” a couple of years ago, but then…
Choroideremia is a disorder that progressively causes you to lose your sight. There is no cure. According to Pinstriped Prospects earlier this year, Markie DeVoe is a 12-year-old living with the…
The Tampa Pig Jig is an annual fundraiser fair held to support NephCure Kidney International, which is a nonprofit that focuses on funding research for Focal Segmental Glomerulosclerosis (FSGS). FSGS…
A mother’s love is like no other. But being told your child will be born with a rare and serious medical condition can be overwhelming. Especially when there’s no cure,…
Rakesh Jain is a professor at the University of Texas Medical School, who recently spoke at a press conference for Neurocrine Biosciences. His talk was covered in an article published…
Ostiio, a new Philadelphia-based medical device company, has made it its mission to improve the quality of life for children that suffer from complications of craniofacial defects (in the middle of…
An immensely frustrating aspect of living with a health condition, and particularly a rare one such as idiopathic pulmonary fibrosis (IPF), is that other people might know nothing about the very disease…
Even good things can be bad in excess. I was always taught that moderation is the key in all things. Is it ok to drink that glass of wine? Yes.…
Alison Laird is 42 years old, and she has GNE myopathy. The disorder causes the progressive deterioration of muscles. It eventually causes immobility. For anyone, the news of this diagnosis…
According to a recent study in Science Daily, scientists have found evidence that one treatment drug's effect on the cells for a specific condition could actually be applied to several…
Two lucky Lennox-Gastaut syndrome (LGS) researchers were awarded grants by the LGS Foundation last week on July 12. These two recipients are both doing fascinating work in LGS research and,…
Senator McCain has been a prisoner of war, has had a history of melanoma, and is 80 years old, so last Friday’s routine check-up didn’t end up being so routine.…
Dogs truly are man’s best friend. They share our lives with us, but now unfortunately, they also share our cancers. There have been speculations for a while that there are…
Learning as much as you can about your diagnosis is the first step toward empowering yourself to take control of your life and make decisions that will help you live…
There’s no question that when life gets chaotic, your health is often impacted. It’s important to maintain a healthy balance for eating and living. Especially if you have hemochromatosis. Hemochromatosis…
I started seeing George in the beginning of my second year of college. It was a great, no-strings-attached, friends with benefits “relationship” that was fun and carefree. After a couple of…
In writing for Patient Worthy, we’re privileged to discover some amazing stories of how people live with—and live through—the adversity of having a rare disease such as adrenoleukodystrophy (ALD). Sadly,…
Parents will do anything for their children, especially Jeremy Cortner, father of son, Casey. According to Journel Sentinel Casey was diagnosed with craniosynostosis at birth, which is a rare condition…
Ah, the seventh-grade science fair, I remember it well. Not being an overly imaginative student, I came home and announced I was going to make an exploding volcano for my…
We like it when people achieve great things despite insurmountable obstacles. This is not unique to living in the modern world or being an American; however, this is a big part…
If you've been looking for great psoriatic arthritis info, then you're in luck! We found an incredible website devoted to everything related to psoriatic arthritis. The aptly named psoriatic-arthritis.com is…
There is a rare disease—and I do mean rare because less than 100 people in the world have been diagnosed with it—and it has an uncommonly long name. Get ready…
The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…
Sometimes I muse considering the first person to pioneer certain things. For example, who looked at mushrooms growing out of a decaying log and thought: “Yum”? Or how about the person…
I think it’s safe to say most people probably dream of making the world a better place in some way. Many of us are able to do just that by…
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