Patient Worthy

6 hours ago

During Rare Disease Month, Patient Worthy is honored to share Jen's journey!
"Hi, I’m Jen. I’m 38—a homeschooling momma, wife, writer, and photographer. I live with Hypermobile Ehlers-Danlos Syndrome, POTS, Mast Cell Activation Syndrome, Small Fiber Neuropathy, multiple autoimmune conditions, and several vascular compression syndromes. After years of misdiagnosis, I finally received the correct diagnoses at age 33. Living with a rare disease isn’t easy. There isn’t always treatment. Many of us end up knowing more about our conditions than our doctors. Most people have never heard of our diseases, and our community can feel small. But raising awareness gives patients like me a voice. Doctors are taught, “When you hear hoofbeats, think horses—not zebras.” But some of us are zebras.
Just because we’re rare doesn’t mean we’re not out there." 🦓💜
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy ... See MoreSee Less

Patient Worthy

12 hours ago

"Hi, my name is Dwayne. Although I wasn’t diagnosed with late-onset Pompe disease until I was 50 years old, it’s always been a part of my life. It’s in my DNA.

When I found out that Pompe disease is a rare disease, the month of February became so much more meaningful to me. I wanted to share the story about my journey with others. I want others to know that they’re not in this battle alone. If my story can encourage someone else on their path, then it’s a blessing.

On Feb. 28, the world celebrates Rare Disease Day. It’s a day when people and families living with rare diseases share their stories and bring awareness to their community. It’s about being part of the rare disease community and showing support for one another. It’s a time for companies and organizations to use their platforms on social media to spread awareness about rare diseases. It’s a day and month when the entire world comes together to raise that awareness.

Rare disease patients are not the horses sitting quietly in the stable. We’re the zebras marching to the hoofbeats of our unique abilities and qualities, the ones that make us rare. We never give up. We stand out in a crowd and make the loudest noise.

Having Pompe disease makes me a zebra. I’m not an ostrich sticking my head in the sand. I have a voice and a story that deserves to be heard. It’s one that I can share with others to help them on their journeys. Rare disease awareness matters to me to make a difference in the world.

On Rare Disease Day, people are encouraged to “show your stripes,” to wear the colors of rare diseases. Post your photos on social media and tag your loved ones, friends, and colleagues to show your support for rare disease patients. I encourage all my friends, family, and readers to share your zebra photos on social media, with the hashtags #showyourstripes. You can even tag me — smashingpompe — to show that you Care for Rare!"

Rare Disease Month may be coming to an end, but here at Patient Worthy, we lift up patient and caregiver voices 365 days a year! Share your story with us: bit.ly/4dV7gru

#RareDiseaseWeek #WeAreRare #PompeDisease #PatientWorthy ... See MoreSee Less

Patient Worthy

15 hours ago

Happy Rare Disease Month from the Patient Worthy team! We are endlessly grateful for this incredible community, and we promise to never stop raising your voices and advocating for the change you deserve. #rarediseasemonth #rarediseaseawareness #WeCareAboutRare #rarebutnotalone #PatientWorthy ... See MoreSee Less