The Walking Meme – Ticks are Basically Zombies
Nutrition and exercise are vital to better health and wellness. Still, getting back into the gym with a rare disease is tough. Staying fit and working out can be so challenging post…
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…
It's that time of year, again, folks. Yep, it's time to CHECK FOR TICKS! These tiny little predators can pack quite a wallop if you get hooked up with the…
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…
Hello my name is Ryan Szanto. I am 78 years old and have been an MDS (Myelodysplastic syndrome, blood cancer) patient for 19 years. I would like to convey to you…
I am the mom to a 12 year old with Albrights Hereditary Osteodystrophy, AHO. According to the Genetic and Rare Disease Center, GARD, AHO is a rare metabolic syndrome created…
Have you ever been worked by your job so hard that you think "I need a vacation!"? I know I have. Have you ever been worked so hard by your…
¿Te has preguntado qué se siente tener la Enfermedad de Inmunodeficiencia Común Variable (ICV)? Este video explora la vida del día a día desde el punto de vista de Keith…
Muhammad Ali is known for many things, including being the Heavyweight Boxing Champion of the World, the Rumble in the Jungle and his fight against the Vietnam War. Diagnosed with…
So you just found out that you’re a rare disease girl, and by the way, you’re a rare mom too! So welcome to the smallest and hardest sorority to ever…
When I heard about the “Time for Lyme” Gala event that was held in early April 2016, I was tickled pink. These two daring Connecticut Moms, Rachel Robards and Marissa…
above image by Sandro Georgi Photography In honor of Mother's Day, Patient Worthy is featuring some of the Rare Moms in the community, those caring for children with a rare disease…
Hello my name is Ryan Szanto. I am 78 years old and have been an MDS (Myelodysplastic syndrome, blood cancer) patient for 19 years. I would like to convey to you…
Let's say you broke your left ankle three years ago, and according to all x-rays, it healed beautifully. So why are you still in pain? And not just a dull…
It’s Lyme Disease Awareness Month which mean we get some well deserved time in the spotlight. As I reflect on what Lyme disease has taught me, it has been so…
If all your office chair does is hurt you, maybe it’s time to break up. Estar sentado por horas puede darle a cualquiera un dolor de espalda, pero para pacientes…
With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…