I’m Living My Best Life

When you live each day unsure if it will be your last. If you fear that the next time you walk outside and look up at the sky to feel the sun’s warmth on your face, it’s the final time you will do so unaided. Or if you don’t know…

With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate, or…

Long-term respiratory muscle endurance training (RMET) is a safe, feasible therapy that, in combination with conventional treatment, improves respiratory endurance and general well-being of people with mild to moderate myasthenia gravis. The findings were reported in a study titled “Effects of long-term respiratory muscle endurance training on respiratory…

Hope is an empowering word with an ambiguous interpretation. For each person, hope might look just a little different, but its crucial need in our lives remains integral.  When I was first diagnosed, I thought of myasthenia gravis and the emotional, mental, physical, and even spiritual journey…

Myasthenia gravis and amyotrophic lateral sclerosis (ALS) may share common underlying cellular mechanisms mediated by anti-LRP4 antibodies, a rare case report into both diseases being diagnosed in an elderly patient suggests. The study, “Late-onset Myasthenia Gravis Accompanied by Amyotrophic Lateral Sclerosis with Antibodies against the Acetylcholine…

This past weekend, I attended my doctor’s “special patient day,” a morning event with tea, snacks, and entertainment by local musician Joshua na die Reën. The staff from my doctor’s office was there, including the nurses who take care of me during day treatments and chemotherapy, administrative staff, and the women who assist…

Investigational antibody rozanolixizumab (UCB7665) has proven safe and effective in treating symptoms associated with myasthenia gravis (MG), Phase 2 results show. Based on the results of the MG0002 Phase 2 study (NCT03052751), biopharmaceutical company UCB plans to accelerate the development of rozanolixizumab with a confirmatory study…

The diagnostic process and the journey to correct a disease by effective treatment can seem linear on paper. The reality rarely matches up. In that reality, many with myasthenia gravis become aquatinted with emotional and mental fatigue, the uncertainty of where to place trust, and the weariness of…

Like most chronically ill people, I often get the line, “I don’t know how you do it.” To be completely honest, nor do I. I just do exactly as healthy people do. I wake up, get up, survive, and go to bed. On some days, I have an emotional breakdown in…

Gut microbiota is altered in people with myasthenia gravis (MG), opening the door for exploring the use of microbiota-modulating therapies, like probiotics, as potential ways of better managing the disease. Results of the pilot study, “Fecal microbiota profile in a group of myasthenia gravis patients,” were published in…