If you are like me and have complete inability to regulate temperature, then you might be looking for some awesome accessories to make life a little less painful this winter…
I love the holidays. The lights, decorations, family time... even the smells are better! People generally seem to be jollier, even though there are a few obvious stresses that come…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
Thanksgiving is a time of gratitude, family and maybe a little gluttony. It was always my favorite time of the year in high school and college. Now, while I still…
The road to diagnosis for a rare disease patient is often a long one. Countless doctors, appointments, and tests are typically needed to finally discover the cause behind one's symptoms.…
Since 2012, the nonprofit organization Dysautonomia International has organized Dysautonomia Awareness Month. With the goal of spreading awareness of the condition in the medical community and among the general population,…
When Jacqueline City went to a concert in high school, she didn't know that her life was about to change forever. At the time, Jacqueline was 18 and living in…
Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness.…
By Danielle Bradshaw from In The Cloud Copy For the past five years, it has become more and more apparent that some people have a greater predisposition to suffer from…
In a story written for The Washington Post, Jessica Slice writes about a frightful predicament for patients with chronic illnesses that cause disability. Jessica lives with dysautonomia and hypermobile Ehlers-Danlos…
By Natalie Homan from In The Cloud Copy Mara Clawson is a visual artist who uses many different mediums to create art pieces that are full of color and life.…
Gina, a 14-year-old Jewish girl, had familial dysautonomia when she passed away. She was described as a having a 'positive and upbeat attitude' and enjoyed spending time with her older…
.jpg)
About one to three million people in the United States are living with postural orthostatic tachycardia syndrome (POTS). The disease affects one in one hundred teens and is more common…
According to a story from the Washington Post, Bob Schwartz is a walking, talking medical mystery. He lives with a strange and diverse array of difficult symptoms, and after being…
According to a story from UToledo News, a recent study conducted as the school's College of Medicine and Life Sciences may make it easier for postural orthostatic tachycardia syndrome (POTS)…
.jpg)
Doug Lindsay ran track in high school. According to an article published by CNN Health, Doug had big plans as a senior at Rockhurst University in Kansas City where he…
Mucolipidosis Type IV Mucolipidosis Type IV (ML-IV) is a rare disease which causes a reduced mental capacity and blindness. ML-IV is caused by a missing or malfunctioning TRPMLI protein. Most patients never…
As it turns out, I am obsessed with Scrubs. The TV show, not the song. When I was at my sickest to date, those TV episodes got me through a…
As much as there is so much to talk about regarding dating while battling a chronic illness, I want to focus for a moment on what my long-term boyfriend has…
Recording artist, published author, songwriter, musician, painter (acrylics)-- who would have thought the fun would begin after 40? I think I was born laughing. Humor has played an integral role…
This is part two of Morgan's story. Read the first half here. I was taken off of work and school for three months to monitor my condition. I had to drop…
This is part one of Morgan's journey with POTS. Check out the second half of her story here. Like most stories, mine begins with someone else’s. I was in sixth…
My name is Jasmine Taylor and I am 12 years old. October is one of my favorite months (July is the other one- it’s my birthday month!)… Let me tell…
This is the second part of Amber's story. Check out part one here. June rolled around, and my appointment with the rheumatologist came up. The hour-long car ride there made…
Hello all! My name is Amber Aerni. I am 28 years old, and I would like to tell you the story of my POTS journey. Yes, I refer to my…
© Copyright 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.
