Hi Friends! Welcome and thanks for visiting my MG Walk page! I thrilled to be back in action for this year's 2018 New England walk for the second year - especially after our incredible outcome last year.
Below is my story...
As most of you know, my name is Jess and I am 27 years old. I am a pediatric nurse, an avid skier, and a certifiably crazy dog lady. I also have Myasthenia Gravis.
Besides being a mouthful, Myasthenia Gravis is a chronic and rare autoimmune neuromuscular disorder for which there is currently no cure. Myasthenia affects the voluntary muscles in my face, arms, and sometimes involves my respiratory muscles. I often have trouble chewing, swallowing, speaking, smiling; experience significant arm weakness; and persistent double vision with droopy eyelids during my exacerbations that last days to weeks.
I was diagnosed with Myasthenia in October 2015. Shortly after it was determined that I have, what they call, "MuSK Positive" MG. This means I have an antibody that does not respond to traditional MG treatments making it difficult to prevent or control symptoms and also puts me at higher risk of respiratory crisis. Only 4-8% of Myasthenia patients are MuSK Positive.
For the following 18 months my neurology team struggled to keep my exacerbations under control. As a result, I underwent over 40 Plasma Exchange (PLEX) treatments in addition to long term steroid and immunosuppressive therapy. Typically, I could not go longer than 7 days without PLEX despite countless attempts to space out treatments.
Life as I knew it (before MG) had become a thing of the past. I tried to be as stoic as possible but I would be lying if I said that months of repeatedly succumbing to this disease did not take a profound toll on me... However, at the end of the day I made the decision that I could not and would not be the victim of this disease.
January 2017 I received a rituximab infusion that completely changed my life. Within 6 weeks I was completely symptom free. I will never forget the moment that I realized for the first time in over 2 years I was able to smile normally (I’m not sure what was more liberating; being able to successfully take a selfie - or - not needing PLEX treatments). Today, over a year later, I am still in remission. I am so grateful for everyday that I wake up and can see straight, smile, and speak clearly. All I have to say is: Rituximab is the bee’s knees.
Last year I told my story openly and publically for the first time ever on this fundraising page. The response was extraordinary. We received donations of incredible generosity and when the day finally arrived I had over 40 friends and family walking by my side.. I was overwhelmed by all the love and support, and for the first time since my diagnosis I realized I am not alone.
The MGFA has essentially been my lighthouse in this uncharted and uncertain territory living with MG. They work tirelessly to provide support and resources to better the lives of MG patients (like me!) and their impact is extraordinary. So please help me support them by joining my team or making a pledge Together we can make a difference!!
With appreciation and love,
Jess Larkin :)