Sarah Shell's LEMS Journey
27 May 2016

Sarah Shell's LEMS Journey

Hello, my name is Sarah Shell. I am 21 years old and I was diagnosed with the congenital form of Lambert Eaton Myasthenic Syndrome when I was 18.

I first got sick when I was a sophomore in high school. I had lost 23 pounds and started showing weird neurologic symptoms. For example, my eyes stopped tracking left and right, I couldn't swallow well, and I began to pass out frequently. I was passed along from specialist to specialist so they could rule out the things in their specialty field. I heard everything from brain tumor, cancer, untreatable autoimmune diseases, and rare fatal genetic diseases. I went on the journey of specialists for about three years. I've been to Birmingham, New Orleans, and Atlanta.

In February 2013, my world was flipped upside down. I was a freshman in college. I was living with my parents at the time and on Valentine's Day morning I woke up in the middle of the night and knew something wasn't right. My heart rate was over 160, I was dizzy, and I was shaking. I went downstairs to wake up my parent's. My mom checked my heart rate and knew something was off so she went to grab something. By the time she came back, I had passed out on her bathroom floor. When she finally got me to come to, I couldn't feel my left leg or arm, and I was extremely weak. They rushed me to the emergency room where it was eventually determined that I had a stroke-like episode. I was admitted to the hospital to determine the cause but no one could figure anything out. I was so weak and my left side wasn't working, I couldn't walk, shower, or move around without assistance.

Five days later I was discharged from the hospital and my parent's were told I would be in a wheelchair and unable to walk until they figured out what was wrong with me. I went home in my wheelchair and started to adjust to my new life. It was so crazy to me to be an 18 year old college student that was completely incapable of doing anything for myself. I had another episode similar to the first one in April. These episodes led me to see a nerogeneticist in Atlanta fairly quickly.

After a few appointments and an unbelievable amount of testing with him, I was diagnosed with Lambert Eaton Myasthenic Syndrome. So we thought what now? I had a diagnosis but we knew nothing about the disease, how to treat it, or how to make me feel better.

I found a support group on facebook and that helped me understand it a little bit. I started to get IVIG infusions once a month. Those changed my life. They restored the feeling in my hands and feet, increased my energy, and increased my strength and stamina. I had learned to live my new life, I was walking again, doing a lot of things for myself, and I had started going back to school.

Then I heard about a LEMS conference in Orlando put on by NORDt. My mom and I decided we should drive down there and go to see what it was all about. At that conference, I met Dr. Alsharabati and two other women who are also battling the disease. At this conference I found out about Firdapse. I was so excited. Dr. Alsharabati said he wanted to help me and get me on this medicine.

A few months later, I started Firdapse and I became a whole new person. Within an hour I felt like I have never felt before! In 2013, I did not have much hope for living with this disease. Here we are in 2016, I have so much more hope knowing this medicine is out there and that it is helping me immensely.

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Help others learn about Lambert-Eaton Myasthenic Syndrome (LEMS) by sharing your story. Your personal journey will help inspire and connect other LEMS patients and inform rare disease stakeholders and the public about this rare, autoimmune disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.