Jessica Larkin

New England | MuSK-eteers

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 unrelenting severe double vision or that I am struggling to hold him for longer than 2 minutes 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 :)



Raised: $5,030
Goal: $5,000
100 percent raised

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Rank:  
#4  National 
#1  Local

Thank you donors
Rene DiPietro : $30
You're amazing <3 <3 Love you!
Anonymous
John Candon : $200
Good Luck from the Candon's.
DAVID ARCHIBALD : $50
Mary Stille : $50
Wish I could have been there good luck! <3
Christopher Pineau : $100
Show them who the top walker is in the family Jess. Good luck! Chris & Donna
Emily Milone : $50
We're all here to support you, can't wait for the walk!
Marcellus Lee : $50
Anonymous : $50
Good luck Jess!
Brianna Benjamin : $100
Anonymous
Good luck Jessica
Brad and Kristin Cady : $150
Anonymous : $50
Thumbs up to you, Jess
Meghan Hoffmann : $50
Love you, Jess!! Dave, Charlie, and I are all cheering you on!!!!
Eric Gantwerker
Timothy Hathaway : $500
"Together we can make a difference!!", You said it! Love to you, Sandee, Rachel, Ethan, Liz & Tim
Robert O'Connell : $100
Take your Dad he needs a walk! Have fun Robert and Sharon.
Ethan Hathaway : $500
Charlene Cesarini : $50
Wishing you all the best.
WILLIAM ENGEL : $150
Good Luck Jessica
Lindsey Hildenbrandt : $100
You got this Jess! We love you! ~Lindsey and Sean
Kathy Beech : $100
Good Luck Jessica!
Dru Gillespie : $100
If love to walk with the team??
Adam Hayes : $200
Enjoy the walk??Marlo and adam??
Anonymous : $500
We are with you .Go Jess
Jillian MacIsaac : $100
We love you Jessie!!! You got this. Admire your grit and positive attitude. Xo Jill and Dan
David Sommers : $100
MuSK-eteers
Jessica Larkin - $5030 raised
Caite Cutler - $0 raised
Jennifer Fix - $100 raised
Lori Dernier - $0 raised
Rose Maccarrone - $0 raised
Sheila Troy - $0 raised

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