Editor’s Choice: What Does Salt Have to Do with Rare Disease?
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Despite what strangers and acquaintances seem to think, I’m not a positive or even particularly friendly person. I rarely, if ever, look on the bright side—I don’t even consider literal…
Pinterest: Home of DIY decorations, hair tips, cake recipes, and POTS treatment suggestions... ...Weren’t expecting that last one, were you? In addition to memes and instructions for upcycling vintage suitcases,…
As much as we want the letters DBHD to stand for “Daily Better Health, Dearie,” those very rare people, whose genetic makeup includes a particular mutation, will translate the acronym more correctly…
I love the Golden Girls, and oddly enough, I was watching one of my favorite episodes the day before I started writing this post. The episode is the second of…
Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…
For some cases of dysautonomia, doctors suggest increasing the salt intake in your diet. Doing so may help raise your blood pressure to alleviate light headedness, and improve fatigue level…
When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…
Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about…
Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…
Melissa Nearman was a student with big plans and a great work ethic, with her feet firmly planted on the path to achieving her dreams. After many appointments and tests, doctors…
Happy Independence Day! For those of you in the United States, usually the Fourth of July weekend is a filled with fun celebrations and family. But what about those 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…
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,…
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…
It seems like everyone and their mom has a GoFundMe page for something or other: Want someone else to pay for your trip to New York? GoFundMe. Jumped off a…
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…
We are halfway through 2016 and we want to thank you Patient Worthians, old and new, for reading, sharing your stories, and supporting our patient contributors and writers! As a…
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.…
Kim Kardashian: one of the most famous women in the world. Why, you ask? I honestly don't know. But due to that fact that so many people know and seem to…
Honestly, this is a crazy story-- heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a…
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…