As a child, Farrah Fontaine always knew she wasn't normal. Part of her family descends from the ancient Silk Road, which made her stand out in the Great White North. That's why she wants to give voice to the voiceless so they know they're not alone.
Recently, I wrote a post about the use of complimentary therapies, which are non-medication therapies you can use to help support your body. While things like acupuncture and yoga are…
One of the difficulties facing the IPF community has been a lack of knowledge and awareness about the disease among many doctors and even specialists. An aggressive disease, idiopathic pulmonary…
Hitting up the club? Try hitting up the couch. That’s the reality of life with a rare disease. Forget marathons, Grey Goose, and stilettos. Your life is now Netflix, antacids,…
When you have a chronic illness, "wild" nights tend to become a thing of the past. No more late nights at the club, hanging out until midnight in the middle…
When you have a rare disease, it sometimes becomes all-consuming. It's hard not to focus on all the things you can't do now, or wish you could return to the…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Here are my typical evenings with Behcet's disease: I get home from work and, of course, I'm starving. But I'm also exhausted. Some days, I've planned ahead and have an easy…
We all know the saying: April showers bring May flowers. But did you know that April sharing brings May caring? May is Vasculitis Awareness Month, and the Vasculitis Foundation has…
Alright, folks: Get out your calendars! Or more appropriately, pull up your calendar on your phone! Now, go to May 22nd. It's a Sunday. How does your day look? Free?…
What would you do if you were told that your six-month-old daughter had a rare genetic disorder and wouldn't live past a year? Would you: A. Cry hysterically B. Punch…
If you could alter your child's genes to ensure they wouldn't inherit a rare, chronic disease, would you? That's the ethical question swirling around scientific circles these days, and it's prompted…
Parents who have children with rare diseases know the struggle of seemingly innocent questions and conversations. "How is your child doing?" "Why can't your child play today?" "How strange! He/she was…
Narcolepsy and the military? Not so fast. It's pretty common knowledge that narcolepsy is one of those medical conditions that will prevent you from enlisting--and could very likely lead to…
I'm sure you've heard these popular phrases: Don't judge a book by its cover Looks can be deceiving You never know what someone else is going through until you walk…
It's a new year! You know what that means? TONS of people at the gym. Do you know what else that means? TONS of germs at the gym. When you're…
When you have pulmonary hypertension (PH), sometimes the idea of just walking up stairs can be daunting. Kayleigh Johnson, who has been living with pulmonary arterial hypertension (PAH) for years, is going…
Do you want to be part of cervical dystonia history? Do you want to actually get paid to take an injection to treat your symptoms? C'mon, you know the answer…
"Doctors didn't know what was wrong with me." "The frustration of not knowing what was wrong with me was overwhelming." "It made me wonder if I had gone crazy." Sound…
Traveling can be exhilarating. Exploring different locations, learning to appreciate how others live, and challenging your own perceptions. You can get this experience just from traveling throughout the US! But traveling…
Most girls rebel at the idea of ever becoming their mother. The passive aggressive judgments, the dancing in the grocery store, and of course, the embarrassing stories. As described by…
If you have an autoimmune disease, you probably know that there's a lot of overlap between all the different autoimmune diseases, including symptoms, specialists, and treatments (thank goodness for off-label uses…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
Doctors don't always know best. That's something every parent whose child has a rare, chronic illness understands. These parents featured on Rare Connect finally got a diagnosis of Muckle-Wells Syndrome…
Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…
Just because Halloween has passed doesn't mean we're done talking about brain surgery. Specifically, deep brain stimulation therapy. No, this isn't something like Frankenstein's monster. Deep brain stimulation therapy is…
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