Medical PTSD Is a Reality for Many of Us Living with a Rare Disease

I wake up sweating. I feel tears pouring down my cheeks, and my throat is sore from screaming. Where am I? Why is it so quiet? I get out of bed, walk to the kitchen, and pour myself a glass of cold water, splashing a little onto the floor as…

A type of immune cells called natural killer (NK) cells may be able to reduce symptoms of myasthenia gravis (MG) by regulating other components of the immune system, a study in rats showed. Targeting these cells might be a valid therapeutic pathway for treatment of MG and other…

Treatments conventionally used for myasthenia gravis (MG) can produce side effects that negatively impact the daily lives of patients and may deter them from taking their medications properly, according to a study which also highlights the need for more effective and tolerable treatment options. The report, titled “…

A broken promise can often lead to immense disappointment. For someone with myasthenia gravis (MG), a failing immunosuppressive medication can easily lead to a broken heart. Immunosuppressive medications combat the autoimmune nature of MG. Unfortunately, I have refractory seronegative MG. Refractory means that either I do not respond to…

Treatments promoting the formation of acetylcholine receptor (AChR) clusters could represent a new therapeutic approach for people with MuSK-autoantibody positive myasthenia gravis (MuSK-MG), a preclinical study suggests. While the data still need to be confirmed in further studies, researchers highlighted the therapeutic potential of targeting MG-associated cell processes, instead of…

The majority of myasthenia gravis (MG) acute exacerbations are associated with infections or with certain medications, a recent study suggests. These findings suggest that patients on certain medications, such as beta blockers and antibiotics, should be closely monitored and highlight the importance of vaccination. The study, titled, “…

In people with ocular myasthenia gravis, the presence of anti-AChR or anti-MuSK antibodies likely increases their risk of disease generalization to the rest of the body, according to a recent study. Researchers also call attention to the disease when it’s associated with certain cancer therapies, due to greater…

Most patients with late-onset myasthenia gravis (LOMG) — those whose disease appears at age 50 or later and is not related to tumors in the thymus gland — are men, have mild-to-moderate disease, and respond well to treatment with oral prednisone combined with azathioprine, a study in…

Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s highest-ranking health official said. “We have to think about how our financing system can protect those with serious and rare illnesses.

A rare case of myasthenia gravis (MG) complicated by a tumor in the thymus and an immunodeficiency known as Good syndrome has been documented by researchers, who warn against heavy use of certain immunosuppressants that are likely ineffective and pose a risk for serious infections. The…