High Schooler Spreads Awareness by Sharing Her Rare Disease Story
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
My name is Jeremiah, and I have Postural Orthostatic Tachychardia (POTS). My body has been a source of significant challenges since I was very young. Asthma, unexplained rashes, passing out,…
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
A genome-wide association study on irritable bowl syndrome found several links to certain DNA variants that are only present in women, reports Healio. This is consistent with the disease, which…
The 2018 Mrs. Maine International Pageant will be so much more than a celebration of poise and beauty. It will also make history when Devan Demmons will proudly walk on…
Khadeeja Munchi - Kay for short! - of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she's decades older. "Life…
Neurologists working at the NYU School of Medicine have developed a test that can identify some rare degenerative brain diseases, reports NYU Langone Health. Published in the Annals of Neurology…
I lived with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder, my whole life and had no idea until I was 21. The symptoms were all so random, separate, and…
If you live near Pompano Beach in Florida, the Water Balloon Bulls-eye charity event is not to be missed, reported Sun Sentinel. The event is focused on raising money, as…
For people with postural orthostatic tachycardia syndrome (POTS), everyday activities can sap a lot of strength. POTS is a form of dysautonomia that is characterized by a shortage of blood…
Kelley O'Brien's hands shook as she stood in her bathroom, preparing for a date. It wasn't that she was nervous, or at least, she wasn't nervous in the way that…
Enfermedad crónica afecta para siempre la perspectiva de la vida de un paciente. A veces, esa perspectiva depende de cómo el paciente se siente físicamente en ese momento. Después de…
The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…
When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn't really walk and I was hooked…
Back in 2015 I was diagnosed with POTS, a form of dysautonomia. Dysauto-what? Yeah, exactly what I was thinking. After doing all my research and being super upset at what…
Right up front, I'll admit I’ve done this: You’re in a parking lot looking for a parking space when you pass a handicapped spot. You see the placard that gives…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
Who doesn’t like a good comeback story? Especially when it's about POTS? There are far, far, far too many challenges in life that can make a person come undone. From…
A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…
Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…
Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…
Have you ever been lonely in a crowd? Have you ever been perfectly content all alone? Me too. And although it’s a little crazy to admit, I’ve also suffered from…
My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter. I know she’s raising her first-born child with familial dysautonomia (FD). Problems related to…
Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…
Ever wonder what it’s like to be so sick and disabled that you can’t live a normal life but you aren’t sick or disabled enough to actually be considered disabled?…