Conoce a Hannah, no puede no darse cuenta de todo lo que ella lucha con mirarla. Ella tiene doce años de edad. Esta es #InvisibleFight de Hannah Con Osteodistrofia hereditaria…
Mi nombre es Lisa. Soy sobreviviente luchadora del cáncer 3 veces, y estoy viviendo con la enfermedad autoinmune rara Miastenia Gravis. Soy una madre, una esposa y un Consultor Integral…
Soy Caroline McCarry. Soy una hija y un amigo; una hermana y un primo; un panadero y un escritor; una animadora y una persona que ha sufrido de TOC y…
Hace 13 años, después de haber sido diagnosticado con una enfermedad crónica, Lisa Copen no podía dormir. Ella estaba tratando de encontrar la manera de manejar su nueva normalidad. Ella…
Ser diagnosticado con una enfermedad neurológica crónica puede ser reivindicación después de años de incontables especialistas visitas, pruebas e investigaciones. Sin embargo, hay todavía un tipo de período de duelo…
Read Part 1 of this hot debate here! A huge body of research agrees with these findings. However, the exact “medicinal” value we can place on physical activity is not…
For individuals with cystic fibrosis (CF) who know by personal experience the benefits of exercise in treating their condition, Courtney Wheatley, Ph.D. agrees with you and is working to demonstrate…
Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness and condemned…
This year’s holiday season was difficult. Allow me to explain by saying that it was great to be with my family after at least 20 years of not being in…
We are happy to say that through our partnership with CysticLife.org and our awesome readers like yourself, Patient Worthy was able to hit one of it's New Year's Resolutions already....…
Before I was officially diagnosed with Postural Orthostatic Tachyardia (POTS), I just thought these weird symptoms were a part of me. People would make comments and I would respond with…
The mistletoe has been unhooked from the ceiling. The garbage man has manhandled your limp tree from your curb into his behemoth monster of a truck. The toys you just…
Although it is often called the "Most Wonderful Time of the Year", people can get pretty up-in-arms about holiday lingo and traditions. If you don't believe us, just ask Starbucks...…
We know that the cost of medical treatment, even with great insurance, is high. Transportation, parking, inability to work full-time because you are taking care of a very ill family…
Newly diagnosed patients and those who have been living with their illness(es) for a long time cope with their situation in very different ways. Some like to read while others…
What do you do with 180 minutes? Think about it for just 1 minute... Now, spend 1 more minute watching the video below. For the some 30,000 people living with CF, days…
Franciscan Institute for Science and Health in Steubenville, Ohio sponsors research on metabolic defects which can lead to rare mitochondrial related seizure disorders. While this is a limited rare disease program- if…
Imagine for a moment what your version of a perfect life looks like. Perhaps it’s a glamorous life filled with fame and fortune, or perhaps it’s a life where you…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
Have you ever felt lost in your own body? Have you ever temporarily lost your hearing due to massive ringing in your ears? Have you ever had the world go…
10 Things I have learned from living with Ehlers-Danlos Syndrome 1. It is not that bad to be spontaneous When I was younger I had plans and lists for…
10 Dinge, die mich das Leben mit dem Ehlers-Danlos Syndrom gelehrt hat 1. Spontan sein ist gar nicht schlecht Als ich jünger war hatte ich Listen und Pläne für…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
Ignorance - Lack of knowledge, learning, information. Careless - Having no concern or care, not paying attention. When trying to find the perfect words to describe the youngest Jenner's latest…
Unless you live in a box (or don't frequent Amazon.com), it's Christmahanawkanzika time! The most wonderful time of the year! To continue the trend of the winter festivities, we wanted…
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.
