Patient Worthy

34 minutes ago

Behind every rare diagnosis is a story that deserves understanding.
💬 What’s one thing you wish people truly understood about rare disease?
Drop your thoughts below! #RareDiseaseMonth #RareDiseaseAwareness #RareDisease #PatientWorthy #ReplyAll ... See MoreSee Less

Patient Worthy

51 minutes ago

During Rare Disease Month, Patient Worthy is honored to share a story from Steven who has been diagnosed with Waldenström's macroglobulinemia.

"My name is Steven and I am 73 years old, and in 2014, I was diagnosed with Waldenström's macroglobulinemia. Having a rare blood disease means staying on top of my health by constant follow-ups at a specialist several states away.
Having this rare disease means taking it one day at a time. I want to do things on my own, but I appreciate all of the help I get as my activities are limited at work.
I look forward to February each year as Rare Disease Month calls attention to those who have been diagnosed with a rare disease.
February is also another chance to advocate for rare disease as I hope one day there will be a cure for Waldenström's macroglobulinemia instead of just being treatable."

#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy ... See MoreSee Less

Patient Worthy

4 hours ago

Turner syndrome is a rare genetic disorder affecting females, caused by a missing or partial X chromosome. It leads to various physical and developmental issues including heart defects, growth problems and learning difficulties. Diagnosis is often delayed, especially in milder cases, which can impact treatment and well-being. Key features include short stature, hearing loss, and cognitive challenges, but many individuals have normal intelligence and can thrive with timely care. Click the link in our bio to share your story with us today. #girlshealth #turnersyndromeawareness #PatientWorthy 💐 ... See MoreSee Less