Just over a week until Christmas and Hanukkah everyone! I am counting down the days until the celebrations begin with friends and family, which albeit can be stressful with chronic…
When you live with a life-changing disease like myasthenia gravis, or MG, it’s normal to feel down or have difficulty adjusting to the loss of control. For many, it’s easy…
Happy December Friends! Ah, the week after Thanksgiving is always easy for me knowing Christmas is just a few weeks away! This week, we have a story about a doctor with…
How often may we get the chance to hear about how a doctor feels in dealing with their own chronic conditions? Not very often, right. Well, watch this interview from…
The physicians who left me undiagnosed said "we" missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally…
Have you found a comprehensive resource for living with myasthenia gravis (MG)? This is the website you need. From the first click, the Myasthenia Gravis Foundation of America (MGFA) webpage…
Myasthenia gravis (MG) is a neuromuscular condition that causes weakening of the body's skeletal muscles. It's a rare disorder and there is no cure at this time, but research continues and…
Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…
Welcome to this week's Editor's Choice! Mysthenia Gravis has to be treated delicately, as it's unpredictable and often incredibly painful. That's why the blogger we've highlighted below wants you to…
The first paragraph of the myasthenia gravis (MG) “Fact Sheet,” created by the United State’s National Institute of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) and posted…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Let’s do a quick poll. How many times have you been talking to the curious or well-meaning about how you live with a rare disease and gotten this question: “What does…
Recently, I wrote a post about the use of complimentary therapies, which are non-medication therapies you can use to help support your body. While things like acupuncture and yoga are…
I think most of us have realized by now that being a special snowflake doesn’t always feel that special. As much as I’m a proponent of celebrating our differences, when it…
When one myasthenia gravis (MG) patient musters the strength to get out of the house, she often receives the same compliment: “You look great today.” But because she feels so…
Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about…
Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
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.…
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…
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…
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…
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…
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