Hi friends!! Thank you for visiting my MG Walk fundraising page!
As most of you know, my name is Jess and I am 26 years old. I am a pediatric nurse, an avid skier, and a certifiably crazy dog lady. I also have Myasthenia Gravis.
Below, is my story... (I realize its lengthy, so for those of you who would like to bypass the details - you can do so by skipping to the last paragraph)
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.
Over the last 18 months my neurology team struggled to keep my exacerbations under control. As a result I've had over 40 Plasma Exchange treatments in addition to long term steroid doses, and immunosuppressive medications. Typically, I could not go longer than 7 days without Plasma Exchange despite countless attempts to space out treatments.
Below, you will see a photo of myself and my godson at his christening. Looking at that picture (..once you get beyond the muffin-of-love that is my godson) you can probably notice my drooping eyelids and weak smile. What you can't see is my severe and unrelenting double vision or that I am struggling to hold him for the picture because of the fatigue in my arms.
I did my best to be as stoic as possible but there were times that I could not ignore symptoms, especially when they had the potential to negatively affect care of my patients. Subsequently, I missed a significant amount of work during flares (for those of you who know me, you can imagine how much this ate away at me). I would be lying if I said that months of repeatedly succumbing to this disease did not take a profound toll on me.
With all that being said - I have MG but MG does not have me. Ultimately I decided that I will not be the victim of Myasthenia. MG may slow me down at times but it will not stop me from living my life the way I want to. Today, thanks to a drug called Rituxan, I have been symptom free for almost 4 weeks!! Although we are unsure how long this remission phase will last (..hopefully a few months!), I am grateful for every day that I wake up and I can see straight, smile, and speak clearly. It's important to remember that not all MG patients are this lucky though.
Please join my team or make a pledge to help us support research that will provide resources to better the lives of MG patients (like me!), and most importantly to find a cure! Together we can make a difference!!
With appreciation and love,
Jess Larkin :)