A new drug for my Myasthenia Gravis may be a life saver for me, but it will cost a half a million dollars a year for life.
I have an autoimmune neuromuscular disease called Myasthenia Gravis, also known as MG. This disease causes mild to severe, and even life threatening muscle weakness every single day of my life. My weakness can range from a droopy right eyebrow, to the inability to walk, to hold my head up, and sometimes, the inability to breathe, chew, speak, swallow, or move any part of my body at all.
At this point my disease is considered “refractory” which means I responded to any of the treatments I have tried. It also means the side effects I experience are too severe for any of the current treatments to be sustainable. I have also developed a life-threatening allergic reaction, called anaphylaxis, to the only quick acting emergency treatment available for people with MG.
Two days every week I receive intravenous immunoglobulin (IVIg). [Special thanks to all the blood donors out there!] Despite my reliance on IVIg, there are times when it isn’t enough to keep me out of respiratory failure and ICU.
I also take 3 other immunosuppressant drugs which leave me extremely vulnerable to infection, illness, cancer, and organ failure. A PORT in my chest is a semi-permanent access to my vasculature to allow emergency access quickly. The PORT also puts me at much greater risk of infection and blood clots, which many of my MG friends have experienced, and many have lost their lives to.
Everything in life has to be adjusted to accommodate the unpredictable nature of an autoimmune muscle disease. The kind of home and car you buy, the plans you make, the events you can attend, the things you can do in a day. You need to store energy just to be able to have a conversation with your children, or to wash AND blow dry your hair in
the same day. On harder days you’re lucky to be able to eat a meal that is not blended, or take a breath without a machine. Things that a healthy person doesn’t think twice about.
I have been waiting and fighting to start a new treatment which has worked miracles for so many like me. The new medication is called Soliris, it works by protecting red blood cells. The cost is over half a million dollars a year and it would be taken for life.
There is a very good chance I will start Soliris sometime in the next month or so. I have been in and out of the hospital for this last year. My MG has pushed my family to our physical and emotional limits. We are so hopeful that this treatment will turn the tide for us. I am hoping to be able to return to school and continue studying nursing and medicine, maybe even work again.
Despite all of the difficulty – the roller coaster that is chronic illness – my adopted family and friends have been great. I don’t know how half a million dollars a year is going to happen. For now I continue to fight to live as meaningful a life as I can with what time I have. Everyone you know struggles with something. No one is more or less important than anyone else. Myasthenia Gravis happens to be one of my struggles, and I’m grateful to those around me who choose to help me overcome its obstacles, and help me carry its burden.
Candace is a Myasthenia Gravis patient who is dedicated to bringing the struggles of her community to light. She is recently married and living her life to the fullest.