June is Myasthenia Gravis Awareness Month and Patient Worthy is here to help the cause. We recently published this great article about having a sense of humor when dealing with myasthenia gravis.…
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
What do June and snowflakes have in common? June is Myasthenia Gravis Awareness Month, and those afflicted with MG are often called snowflakes because no two people with MG have…
Gaucher, considered a rare, life-threatening disease, affects 1 in every 40,000 to 60,000 individuals, and in most cases, the disease is misdiagnosed, which is just what happened to 18-month-old Tamara…
The future can be overwhelming, and by "the future" i mean sometimes even just next week. Take things day by day and give yourself time to recuperate and refresh before…
I hate the sound of the word “lesion.” I think it ranks right up there with the word “moist” in icky-ness. And I’m willing to guess men with axial spondyloarthritis…
Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…
Myasthenia gravis comes from Greek and Latin words meaning grave muscular weakness. It is a is a chronic autoimmune neuromuscular disease defined by fluctuating weakness in the voluntary muscles. It effects…
“I can’t even remember the name of that new drug Jo used,” my cousin told me, “but it did help improve the time she had left.” Jo was one of…
Not only is a chronic illness always hanging over your head because of it's cost to your health, your social life, and overall well-being, most times it also takes it's…
In every great mystery novel, there's a code that needs to be cracked so the protagonist can triumph in the end. When it comes to medicine, that code is the…
In order to learn about something new, I need to know what the words describing the illness mean. If you look at the word "dysautonomia," and have never run across…
On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…
Take a deep breath and know that even if other can't see it, your day, living with chronic illness, has been a battle. Every part of today has been a…
I would look into the mirror each day and not recognize the face staring back at me. It wasn’t that I was getting older or that I had gained some…
MPS Awareness Day has come and gone, but that won't stop us from spreading information! In honor of MPS Awareness Day (which took place on May 15th), we'd like to do…
June is the awareness month for myasthenia gravis. People with MG are known as Snowflakes because no two snowflakes are exactly the same, just like no two people with MG…
Amyloidosis is a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no cure, there are treatments and organizations that can help. Enter,…
Not many diseases affect the nervous system like Parkinson Disease. Millions of people had no idea what Parkinson Disease was, or how life-changing it could be, until one of America’s…
It seems like everyone and their mom has a GoFundMe page for something or other: Want someone else to pay for your trip to New York? GoFundMe. Jumped off a…
¿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.…
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