Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
This is part 2 of Marian'a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we proceeded with some more testing.…
Dear Ehlers-Danlos Syndrome, I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t…
What is a strawfie? A selfie (picture of yourself) while breathing through a straw. You've met Cassie Hawthorne in Patient Worthy's write up Model with Cystic Fibrosis Bringing Awareness to Disease earlier…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
When most people think of Lyme disease, the first thing that comes to mind is usually a big, fat tick (immediately followed by manic itching). What’s harder to wrap your…
With baseball season upon us, we wanted to check in on our Ankylosing Spondylitis (AS) celebrity baseball player Franklin Guitierrez, who turned misfortune into a learning opportunity, and rises like the…
Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…
PW Contributor and caregiver Gloria Szanto, shares with us how she is able to live a healthy, family-filled, yet busy life while caregiving for her husband. Hi, my name is…
In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes: "Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the…
Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…
There are three types of hereditary angioedema (HAE)—Type I, Type II, Type III. Original, right? Type I and II are the most common types of HAE. Type III is the rarest,…
“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…
As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…
If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city,…
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…
Dutch-American Reality TV star Yolanda Hadid, who is widely known for her supporting role on The Real Housewives of Beverly Hills, announced in the fall of 2015 that she was diagnosed…
When my daughter was born on August 8, 2012 I became a rare mom. I wouldn't know I was until 15 months later, but my little girl was born with a…
Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…
Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely. I lived in this mental misery for years when I developed dystonia,…
This article is the first in a series written by Carolina, Mariana's mother. Carolina hopes that sharing their story will increase awareness. Ever since Mariana was born, her life has…
The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…
My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…
When you’re a rare mom your diagnosis isn’t always figured out and so in between trying to raise your children, you’re going to doctors and medical centers and trying to…
I am a rare mom. For those that don’t know what that means, rare moms are the silent heroes of the world parenting to the best of their abilities with…
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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.