¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
Happy Father's Day Week Patient Worthians! We hope you celebrated your rare dads this week-- because they deserve it. As you know, it's Myasthenia Gravis Awareness Month so we are highlighting some new drug…
Selfless. Alli Williams is selfless. The 17-year-old received an MPS I diagnosis as a baby. Unlike many kids with MPS, she was lucky enough to receive a bone marrow transplant--something she doesn't take lightly.…
My grandpa—who is one of the most steadfast, honest, and true people I’ve ever met in my life—told me this: “The world isn’t made for ordinary people anymore.” Being a…
Humor helps a lot of people deal with rough situations, but even if that's the case, you may not your doctor to attempt to weave it into an office visit.…
While his peers were getting learners’ permits and homecoming tickets, 16-year-old Conner Vollmer was getting an unexpected diagnosis of myelodysplastic syndrome (MDS). The pre-cancerous condition is rare, and even more…
Eisenmenger syndrome is a ventricular septum defect, which is a complication of a congenital heart defect, including atrial septal defects, ventricular septal defects, patent ductus arteriosus, and more complex types of acyanotic heart disease.…
Conozcamos a Yoni Maisel – un paciente con una enfermedad rara, un activista y blogger. Su meta: crear conciencia sobre las enfermedades raras y ayudar a los demás a través…
For those unfamiliar with it, mucopolysaccharidoses (MPS) is a wicked, wicked disease. It comes in a couple of different forms, but the form one little boy lives with is MPS II,…
Photo by Sandro Georgi Photography "Don’t let Dystonia define who you are. Don’t let it control every single aspect of your life. For myself, it is part of me. It is…
A May 25, 2016 article from Pulmonary Fibrosis News reports that Italian researchers are making headway in determining if a person’s IPF is progressing or not (which is in the…
If you have Postural Orthostatic Tachycardia Syndrome (POTS) then you are familiar with its on-and-off symptoms and living with generally unreliable health. What's more, is you may try to explain it…
As if you needed further proof that the human spirit can accomplish incredible things, here’s a great story from “across the pond.” In 2012, 15-year-old British student Jessica Gillatt was…
Con el tiempo, se habrán dado cuenta de que tiene dolor en el cuello, y que está más rígido en la mañana de lo que son por la tarde. El…
Here at Patient Worthy, we know how hard it can be trying to find information online about rare diseases. Blogs about personal experiences can highlight the worst aspects of a…
In 2013, the British Lung Foundation (BLF) released a Patient Charter for people living with IPF, or idiopathic pulmonary fibrosis. In it, they outline the five basic rights of people with…
We are halfway through 2016 and we want to thank you Patient Worthians, old and new, for reading, sharing your stories, and supporting our patient contributors and writers! As a…
Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, has got to be scary. It's a progressive disease and the only "cure" is a successful lung transplant (which obviously carries severe…
Miry Constantini-Souroujon is a professor in the Department of Natural Sciences at the Open University, Israel. She has spent three decades studying myasthenia gravis (MG) and ways to treat it. Here, we…
Parado frente a una multitud de gente hablando sobre su HFHo puede ser intimidante. Imagina que esa multitud fuese un panel de doctores y científicos que son parte de la…
Say what you will about genetic testing—or testing in general—but North Carolina is finally feeling out the waters when it comes to newborn testing. The state is currently piloting a study…
San Angelo Live reports Keelie Brydson first noticed something was wrong in the fourth grade when, she says, "my eyelid would be really droopy." Turns out that Keelie has myasthenia…
Ankylosing Spondylitis (AS) is a systemic arthritis that attacks the patient's spine. In most cases, AS starts with lower back pain that is present every day for at least three…
So this is kind of a bummer: Clinical trials looking into using Alexion Pharmaceutical’s drug Soliris for treatment-resistant generalized myasthenia gravis have just come up short of expectations. Soliris, which…
One of the most heart-wrenching aspects of Lyme disease is the lengthy process that precedes an accurate diagnosis. Healthcare providers have a difficult time getting a handle on an accurate diagnosis…
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