Julia Naumes

National (Kansas City) | Team Duck Tapers KC

How my MG story all began… I was doing offseason training between my sophomore and junior years of college. I was a track and field athlete and so I was doing a lot of weightlifting over the summer to help me prepare for the season. At that time I could lift #135 for bench press, and one day I couldn’t even lift just the bar, which only weighs #45. That same day I was doing box jumps and I went to jump and only one leg jumped, the other one stayed straight and I scraped my shin on the box. Then I was doing lunges and fell over mid-lunge a few times. That’s the first day that I really knew something was off. Now looking back I recognize that my symptoms had gradually started months to years prior, just based on my athletic performance that previous season. Given that I was 20 years old and in very good physical shape and very aware of my body’s ability and norms, I noticed that something was off right away. I was also planning to study abroad in Ecuador that fall and did not want to be abroad when my body was doing strange things, so I got in with medical professionals right away, and those medical professionals rushed my tests. After a couple months of testing and not finding anything, my PCP told me I wasn’t allowed to leave the country and had to cancel studying abroad. That notification was literally the day before I was supposed to leave the country. I was all packed and everything. It was pretty devastating.

Luckily I went to a great university with awesome professors and mentors who helped me get registered for the classes I needed last minute so I could still graduate on time and complete the prerequisite coursework to apply for graduate school. Fast forward a few more months of testing and every medical professional ordering numerous tests and then handing me off to the next level up of specialists when finally I was referred to a neurosurgeon because an MRI of the base of my spinal cord had shown what they thought was a tumor. They thought I had cauda equina. I had to wait more than a month to get in with this neurosurgeon and was literally getting more disabled by the day. My symptoms started off with troubles with high level exercises and had advanced to difficulty doing the most basic ADLs. Somedays I couldn’t even wash my face because my muscles weren’t strong enough to lift the weight of my arms and the water they held. The neurosurgeon took one look at my MRI and said that was an incorrect diagnosis and was about to leave the exam room when I asked if he would answer some questions. I thought it only fair that he spend more than two minutes with me since I had waited more than a month to get in with him and knew I would be charged $200+ for my “exam”. He agreed to and I presented him with a list of all of the potential symptoms I could think of and a list of about 20 questions I had compiled while waiting to get in with him. By that point I had started to have the ocular symptoms that are characteristic of myasthenia gravis and so it was fairly easy for this neurosurgeon to recognize myashtenia gravis as a likely diagnosis. He recommended me to a neurologist that specialized in MG. I was able to see this neurologist the following week. He did/ordered three diagnostic tests that day, in addition to his clinical test, all of which verified that I have myasthenia gravis.

I had a robotic thymectomy that spring, which really reduced the severity of my symptoms. Since then I haven’t had severe enough symptoms to limit my ability to wash my face, but I continue to have symptoms everyday of my life. The sad part is that I am one of the healthy and well-managed myasthenics and yet I still feel the impact of this disease every day of my life. I am lucky to lead a very full and normal life. Many people with this disease are not nearly as lucky and are hospitalized multiple times a year for exacerbations. Every year, I hear about three to ten people with myasthenia in the US dying for crises. 

Clearly we need better treatments and more advocacy for this disease. Please join me at the walk and/or make a donation to my team to support a better quality of life for all people with myasthenia gravis!

MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.

Please register to walk with me OR make a pledge to help me reach my goal!

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Raised: $100
Goal: $100
100 percent raised

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Rank:  
#320  National 
#21  Local

Thank you donors
Julia Naumes : $100
Team Duck Tapers KC
Roger Morse - $4070 raised
Adam Silverstein - $250 raised
Ashley Cotten - $530 raised
Beth Darnell - $0 raised
Celia Meyer - $4275 raised
charlene macko - $50 raised
Cheryl Heitman - $1000 raised
Dawn W R - $100 raised
Devon Davis - $100 raised
Janann Abels - $1205.25 raised
jeannie matthews - $25 raised
Jenny Clark - $175 raised
Julia Naumes - $100 raised
Julie Roberts - $150 raised
Kathie Bibeau - $100 raised
Kim Eldridge - $575 raised
Marcia Lorimer - $500 raised
Marley Myer - $10 raised
Mira Gregory - $0 raised
Nancy Law - $1000 raised
Rachel Pegram - $0 raised
Ray Bibeau - $100 raised
Sandy Berto - $100 raised
Sarah Kiesling - $1325 raised
Tira Bluestone - $0 raised

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