REAL STORIES:
Rachel’s gMG story

Getting support from the gMG community

Married mother of 3 and gMG support group founder.

Rachel’s story

My gMG journey began in 1987. I grew up in a military family and spent most of my childhood moving up and down the Pacific Coast from Southern California to Washington State. My mom was “Supermom,” taking care of me and my 4 younger siblings while my stepdad was away for months at a time as a sailor in the Navy. It was a happy childhood filled with making new friends in each new town.

Early signs, early on

When I was 12 years old, we were living in Washington State. I loved hiking, riding my bike, and playing sports. One day, I was climbing the stairs in school when I fell backward. My legs were too weak, and I missed the next step. I was so embarrassed, and it was absolutely horrifying because middle school is hard. Soon, I also became afraid to climb the stairs on the school bus. I was terrified that I would step up and my legs would not be strong enough to pull myself up the bus stairs or if I was coming down the bus stairs, that I would just completely collapse.

I had other symptoms, too. I couldn’t raise my arms to brush my hair. I experienced muscle fatigue quickly and couldn’t babysit my little sisters and brother. What was frustrating is that at times people believed that I was just “being a teenager” and didn’t WANT to do these everyday activities. A few months later, after I turned 13, my mother took me to a neurologist, who diagnosed me with anti-AChR antibody-positive generalized Myasthenia Gravis (gMG). I was too young to realize the impact this would have on my life, and so I didn’t try to learn too much about the disease. As a teenager, I didn’t want to be “different” than my peers, so I kept my illness a secret. There were times where I would be out on a beach all day with my youth group and experiencing breathing problems in the evening. I wouldn’t tell anyone other than my family. Hiding my gMG was sometimes as exhausting as the disease itself.

Struggling into adulthood

My early adult life was filled with hardship. I attended the local community college, after dropping out of college due to my absences and muscle fatigue. And yet, I still didn’t share my diagnosis or talk about my experience with anyone. I felt alone and afraid. Throughout this struggle, there were still moments of great joy: I married my high school sweetheart, and there were also 2 very significant rays of light—the birth of my 2 boys.

I cherished the good days where I could take care of my babies on my own, but on days where I couldn’t get out of bed, I was grateful to have family to help. When I couldn’t be there for my babies, it was heartbreaking to know they would ask “Where’s momma?” and not understand why I wasn’t with them. I was frustrated and felt like a failure as a mother.

Changing perspective

I knew at this point that I couldn’t do it on my own anymore. When I couldn’t find any local support groups, I decided to start one. We were a small chapter, but being able to connect with other gMG patients and caregivers strengthened my soul and gave me a greater purpose. It was these friends who encouraged me to enter the Mrs. Arizona pageant. And it was through this work that I realized that sharing my story not only reduced my feelings of isolation but could help others as well. I often wonder how my life would have been different if I had built my team of supporters earlier, in my teenage and college years, but I wasn’t open to it at the time.

Although these support groups kept my spirits up, managing my gMG was still a challenge. During this time, I followed the progress of research of new drugs for gMG, in particular the SOLIRIS clinical trial. When I found out that SOLIRIS was approved by the FDA in 2017, I went to my doctor and advocated for myself—if it was right for me, I wanted to try it. I have anti-AChR antibody-positive gMG so he agreed we should give it a try.

I had my meningococcal vaccinations before I received my first treatment 2 weeks later, in March 2018. My doctor explained to me that SOLIRIS increases my chance of getting serious and life-threatening meningococcal infections. Meningococcal infections have occurred with patients taking SOLIRIS and may quickly become life-threatening and cause death if not recognized and treated early. My doctor explained that meningococcal vaccines reduce the risk of meningococcal infection but do not prevent all meningococcal infections. I was advised to call my doctor or get emergency medical care right away if I get any signs and symptoms of a meningococcal infection like headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, or if my eyes are sensitive to light.

My infusion was done at a local hospital and took about 35 minutes. They kept me for an hour to monitor me for serious infusion-related reactions, which can happen during the SOLIRIS infusion. After the initial 5 weeks of treatment, I continue to have my infusion every other week as part of my healthcare routine. I have experienced some slight nausea, though the most common side effects of SOLIRIS are muscle and joint pain, also referred to as musculoskeletal pain.

Paving the road ahead

Since then, I feel good and hopeful. I am looking forward to tomorrow. I am able to spend time with my boys, and I can keep up with them. I am starting on long-term projects that I have been thinking about for many years, including getting my master’s degree. And, I am continuing to share my story, to talk to those in my support group about my experience, and to draw strength from our shared experience.

The question that I am asked most frequently is, “How do you still have so much joy?” I depend on my faith, my family and friends, and my support group. My motto is that if you wake up this morning and it is a bad day, there is always tomorrow. Stay hopeful!