Julie Buckholt

My name is Julie Buckholt. My two beautiful daughters and I live every day with a debilitating disease called myasthenia gravis—a disease most people have never heard of, even though it affects tens of thousands of Americans.

Myasthenia gravis (MG) is an autoimmune disease in which antibodies mistakenly attack and destroy neuromuscular connections, causing weakness in muscles that control some of our most basic movements: walking, swallowing, blinking, breathing—even smiling. This disease can strike anyone, whether old or young, male or female; it can attack without warning. Babies born with MG can be so weak that it is hard for them to feed and grow strong and healthy. There are treatments that are partially effective, but there is no cure.

Because even clinicians often know little about myasthenia gravis, its symptoms are frequently misinterpreted, and the condition is often misdiagnosed. It took me a year of multiple doctor visits and seemingly endless tests to get the proper diagnosis and begin therapy.

It was a relief to know what was the matter with me, but I was not prepared for what came next, seeing similar symptoms appear in my two vivacious, wonderful teenagers—and then having my fears confirmed when they were both diagnosed with MG at ages13 and 14. I was heartbroken to realize that they also would have to struggle with the effects of this disease.

How does MG affect our lives? Well, I can no longer run, in fact on some days I am so tired that I can barely walk. When Rachael and Megan are playing sports, they often have to stop and rest—and frequently have to nap when they get home from school. MG prevents them from fully engaging in all of the fun that teenagers should be having—a simple shopping trip to the mall with friends can seem like an impossible trek to them. Medications help to control our symptoms, but I worry about the short and long-term side effects of the current treatments, which can involve strong drugs like steroids. I especially worry about their effect on Rachael and Megan.

MG could dominate our lives if we let it, but we don’t. We cope, thanks in no small part to the support we receive from friends and family—and from the Myasthenia Gravis Foundation of America (MGFA).

Dedicated MGFA staff and volunteers help people to learn disease management strategies, understand treatment decisions, and connect with others through a nationwide network of support groups. Without the information and support we get from MGFA our daily lives would be much more difficult. For example, information from MGFA helped me to advocate successfully and obtain treatment authorization from my insurance company.

I am now an active MGFA volunteer and donor—trying to give back just a little of what this organization has given to me and my family. I want to make a difference. You can make a difference, too.

Every day, new cases of MG are diagnosed. Every day, families just like mine and yours face difficult choices and challenges because of MG. We need more effective treatments with fewer side effects. We need better diagnostic techniques. We need expanded research. We need more public awareness of this disease—and better education for the medical community. And, especially for my girls, I want a cure.

Julie Buckholt