So who doesn't love Doctor Who? It seems like no one in the world wants to keep that doctor away, but only a select few enter the ranks of "Doctor Who superfan." Of…
Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
Lexi New’s Bassett Hound mix Izzy is truly unique, and Lexi credits divine intervention for their meeting. She feels, spiritually, that God wants to help her live life to the fullest. Lexi,…
Nicole graduated high school, but was forced to withdraw from college because she suffers from dysautonomia, particularly postural orthostatic tachycardia syndrome (POTS). This disorder causes rapid heartbeat, fainting spells upon standing,…
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
In order to learn about something new, I need to know what the words describing the illness mean. If you look at the word "dysautonomia," and have never run across…
If you have Postural Orthostatic Tachycardia Syndrome (POTS) then you are familiar with its on-and-off symptoms and living with generally unreliable health. What's more, is you may try to explain it…
Dysautonomia is not exactly a rare disease because it affects so many people. So, it's surprising that so little is known about this central nervous system disease, or what causes it.…
My journey with my 24 yr old daughter's illness began about two years ago. She was living away from home when her symptoms began. She wasn't able to continue to…
What would you do if Princess Leia suddenly went pale and passed out right in front of your eyes? Well, Crystal Caldwell's mother had that experience years ago while taking…
Sometimes when there’s complicated subject matter on the line, it’s easiest to take it back to the basics—in this case, the 5W’s. It’s elementary, we know. But handy, right!? So…
Antes de que me diagnosticaran oficialmente con el síndrome de taquicardia postural ortostática (POTS, por sus siglas en ingles), pensaba que los síntomas extraños eran una parte de mí ser.…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…
En 2013 Nisa despertó en el suelo necesitan puntos de sutura en la cabeza. Ella no tenía ningún recuerdo de caer. Mirando hacia atrás, ese fue el comienzo de su…
This one may not be fresh and recent, but it’s worth another look. It’s kind of an “oldie but goodie,” if you will. And it’s also about damn time someone…
Simply put, Adam Jacobs’ photos are breathtaking. And it’s quite possible that he never would’ve discovered his talent if he hadn’t picked up a camera as a way to distract…
Personally, I'm a cat person, but I've never had any doubt that Dog is Man's best friend. And this story has pretty much solidified that concept for me. Sam Sutcliffe…
When it comes to the different types of dysautonomia, there are often prescriptions doctors try (like Midodrine) to relieve some of the symptoms. But for me, the side effects outweighed the…
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…
To read Part 1 of Mari's #NewYearNewYou post, click here. Now, let's focus on the New Year shall we. What do I want for 2016? That's a loaded question! But, I'll…
So here we are. A new year. 2016: A year for new hope and new potential. I've seen so many friends and family make these "New Year, New Me” New…
Sometimes, when we're caught up in the fear and uncertainty caused by unexplained symptoms, we can forget that doctors aren't god-like machines. Even when you feed them the right data,…
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…
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…
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.
