So I do not think doctors actually say that Fibrinogen Defiency and Glanzmann Thrombasthenia are medically or scientifically cousins, but when I was reading about them I realized that they are…
Emotional support, someone telling you that they're there for you and that things will be OK, shouldn't be underestimated. It's important to have someone to lean on when the going…
You've got more inner strength than you realize! we all will sometime feel run-down, or scared, or hopeless, especially if living with a chronic illness. you have handled everything that's…
We are lucky enough to live in a country where it is our right to pursue our happiness. Lately though, everyone seems so unhappy and easily offended. It seems like…
Sometimes well-meaning friends may not seem as supportive as they could be simply because they don't know how to help. Giving them a little direction would help both of you,…
There are 30 million people in America with a rare disease. That is about 1 in 10, or 10%, of the population. Keep on fighting the good fight, every post…
"Hardships often prepare ordinary people for an extraordinary destiny." -C.S. Lewis People with rare diseases are not ordinary people. The hardships they endure turn them into extraordinary individuals because they…
If you think about the definition of rare, you realize just how accurately it describes people with rare diseases. You are one in a million and you are precious to…
Diane was suffering from severe fatigue, so she went to the doctor and he told her to retire and settle down because she is going to die soon. She decided…
“She had blue skin, And so did he. He kept it hid And so did she. They searched for blue Their whole life through, Then passed right by- And never…
Anyone thinking of unsolicited advice they've been given, from people who don't understand their illness? 9 times out of 10 chronically ill patients don't want to hear what you think…
Jessica Gimeno has five diseases, one of those is myasthenia gravis. In her Ted Talk she talks about dealing with those, along with having depression. Go watch! I love that she…
Have you heard of myasthenia gravis? If not, that's not surprising considering it is a rare disease, with about 20 out of 100,000 known sufferers. However it is probably under-diagnosed and those…
One way people spread awareness is by wearing shirts and other items with messages about what they support. If you want to be one of those people and you want to…
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.…
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…
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…
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…
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…
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…
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…
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.…
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…
Photo by Sandro Georgi Photography "My hope is that my condition finds cures so that other people don’t have to go through it and their kids don’t have to see…
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