Takeda Pharmaceutical has reached a significant milestone in the development of oveporexton (TAK-861), with the US Food and Drug Administration officially accepting and granting Priority
As reported on MedicalXpress, the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion for several therapies this
Editor’s Note: Patient Worthy is proud to share part 7 of 10 of Elena Genik’s blog series, detailing her experiences with Graves disease and thyroid
As reported on the Manila Times, Aucta Pharmaceuticals has officially introduced PYQUVI™ (deflazacort) oral suspension 22.75 mg/mL, marking the company’s entry into the U.S. commercial
CureDuchenne is hosting several free events in 2026 to support families living with Duchenne and Becker muscular dystrophy. These events, called CureDuchenne CARES, will take
Twelve‑month, real‑world data from a large U.S. registry suggest that faricimab provides effective, durable, and safe treatment for retinal vein occlusion (RVO), reinforcing findings from
The U.S. Food and Drug Administration has agreed to review Otsuka Pharmaceutical’s application for centanafadine, a new extended‑release therapy under investigation for attention‑deficit hyperactivity disorder
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease
A first-of-its-kind Phase 3b study has shown that combining Eli Lilly’s Taltz (ixekizumab) with Zepbound (tirzepatide) delivers superior benefits for adults living with both active
As reported by Bioengineer, new insights published by Nastoupil L.J. in Nature Reviews Clinical Oncology (2026) highlight an important evolution in the management of relapsed
Editor’s Note: Patient Worthy is honored to share this article from our friends at Heal Canada, written by Karen Hawthorne. Anemia is one of the
A new study in Nature Communications and reported by Scienmag.com overturns a central assumption in eye biology by showing that key stem cells for the
In a recent statement by AstraZeneca, AstraZeneca and Daiichi Sankyo’s antibody‑drug conjugate Datroway (datopotamab deruxtecan) has been granted Priority Review by the U.S. Food and
Editor’s Note: Patient Worthy is pleased to share part 5 of 10 in an ongoing series of blog posts, provided to us by Elena Genik.
A trio of Swiss biotechnology companies is advancing diverse therapeutic pipelines, with recent developments spanning inflammatory skin disease, immune‑mediated hair loss, and hard‑to‑treat cancers. Together,
As reported on BioSpace, Moderna has entered a commercialization agreement with Recordati valued at up to $160 million to support late‑stage development and future market
Scientists find polymer-coated nanoparticles together with therapeutic drugs offer promise for cancer treatment, including treatment for ovarian cancer. According to Science Daily, these nanoparticles may
A UCLA Health study published on UCLAHealth.org suggests that numbers already used to gauge heart health may also offer an early warning for serious eye
All week, we’re focusing on cutaneous squamous cell carcinoma (cSCC) at Patient Worthy — offering insights, resources, and a platform for patients and caregivers to share their experiences. Explore the latest at patientworthy.com
Have a story of your own? We’d love to hear it: bit.ly/4dV7gru
February is American Heart Month, a powerful reminder that taking care of your heart isn’t just about living longer, it’s about living better. ❤️🔥
🫀 Heart disease remains the leading cause of death in the U.S., but the good news? Up to 80% of heart disease is preventable with simple lifestyle changes.
Here are a few small steps that make a big difference:
✨ Add just 20–30 minutes of movement to your day
🥗 Choose heart‑healthy foods (yes, leafy greens really do help!)
💧 Stay hydrated
🧘♀️ Prioritize stress management
🩺 Keep up with regular checkups
This month, let’s honor our hearts and the hearts of those we love, by making choices that strengthen and protect them. ❤️
#AmericanHeartMonth #HeartHealth #PatientWorthy #Prevention #HealthyLiving
During Rare Disease Month, Patient Worthy is honored to share Nicole's journey!
"You may never face what I did, but if you ever find yourself fighting to have your symptoms taken seriously, this story is for you. When I was 21, I became critically ill with an extremely rare condition called Febrile Ulceronecrotic Mucha Habermann Disease (FUMHD). The name sounds obscure and almost harmless, and that is part of the danger. FUMHD is an aggressive immune mediated disease in which the body attacks itself with such intensity that it can lead to multi organ failure. The outward rash is only the surface of a much deeper systemic collapse.
At the time, I was young, healthy, and had absolutely no underlying conditions or warning signs. The lesions arrived abruptly in the thousands, starting on my stomach and spreading across my body within hours. They began pink and then quickly became inflamed and red. Alarmed, I went to a doctor immediately. Blood was drawn and I was sent home.
When the results returned, my doctor told me that nothing was normal and that my labs resembled those of an elderly patient with a severe illness. Despite this, I was never evaluated by a doctor in the ER, given only prednisone by a nurse, and dismissed. The dermatologist I was referred to performed a biopsy only because I insisted, and I eventually went through five dermatologists before finding one who took me seriously.
Meanwhile, I deteriorated rapidly. The rash continued to spread to my face, hands, under my fingernails, the soles of my feet, and between my fingers and toes. My face took on a yellow pallor, signaling systemic overload. Then the lesions changed shape, rising and turning elongated and red, then gray. This marked the ulceronecrotic phase, when tissue begins to die.
I lived in this state for more than two months, researching everything I could about the “lichenoid” biopsy findings and requesting tetracycline, which ultimately helped prevent secondary infection. As my condition worsened, a dermatologist in New York finally agreed to see me. There, I learned I needed to be admitted to a burn unit, isolated from infection, and treated by multiple specialists coordinating immunosuppressants, antibiotics, and advanced wound care.
Even when recognized early, FUMHD carries a documented mortality risk, and my case had been allowed to progress unchecked for far too long. By all reasonable expectations, I was not expected to survive the way I did. FUMHD is not only rare; it is statistically lethal.
So why tell this story, knowing most people will never face this particular illness? Because this kind of dismissal can happen to anyone, with any condition. Staying silent about what I endured, the fight for care, the refusals, and the constant insistence that “it is nothing,” helps no one. Someone out there is being told that what they are experiencing is harmless, that they are safe, or that they are overreacting.
I share this not because it was frightening, but because sometimes you have to do the work yourself. Sometimes you are your only advocate. That is what I became for myself, and it is the reason I am still here."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy
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