Jessica Collier began feeling the symptoms of Myasthenia Gravis back in 1997. She was officially diagnosed in 1998. Like many in the community, she was unable to obtain a proper diagnosis of MG without a second opinion, and it was many years before being treated properly. But, she never let the disease impact her incredibly positive attitude and drive to do good for the community. She took an extremely creative path to drive awareness of the disease by creating “Mermaid Mondays” during MG Awareness Month every year. Her many friends and family who wear teal or lovely mermaid apparel every Monday in June are a testament to Jessica’s inspiring and powerful support of the MG community and MGFA.

 

MGFA: Jessica, tell us about your MG story.

 

Jessica: I grew up in northwest Florida for 34 years and come from a small rural town called Wewahitchka. When I got sick, I had never ever heard of myasthenia gravis because I was from this small town. I now live in Georgia. In the fall of 1997, I began having difficulties. I couldn’t get out of bed and I had trouble with my footing. Writing and reading became difficult as I was having double vision. I had a droopy eyelid too. I had so many activities that I loved to do.

 

I loved playing piano, singing, and was active in many clubs at school. I was only 17 years old and was right on the cusp of adulthood. I saw my entire life and all the possibilities kind of fall away from me. There were no tests to explain what was happening to me at the time and I finally saw a specialist in Gainseville, FL for a second opinion and was officially diagnosed in February 1998. I went through a lot. I haven’t had a crisis in a while, and my MG was managed well through meditation. When I had my first crisis, I ended up in the hospital for around 20 days. I was student and I’d have to be hospitalized and would need emergency IVIG.  The first few years after that first crisis were up and down.

 

MGFA: But, you stayed positive and worked through it and your energy is infectious.

 

Jessica: You know, I would have flares on occasion, but currently I am on a regimen that works for me. Also, I have a big support team and a huge key to my health is that I’ve found a good balance. I know how to recognize what's going on with my body, I have amazing doctors and specialists who communicate with me and each other to give me the best possible outcome with my MG. So it is manageable as long as I do what I’m supposed to do. Bad days are few and far between now. I know that’s not true for many people, but I finally have a good balance and have achieved a good sense of independence.

 

MGFA: How did you come up with the ideas of Mermaid Mondays in June?

 

Jessica: There is nothing I love more than those “ladies in the ocean,” and I was born in Florida. So, I love the ocean and I just love mermaids. They’re so mysterious and unique and mystical, and I feel that myasthenia gravis is the same. I have always tried to come up with creative things to focus on and I didn’t really like the term “snowflakes” when talking about MG. I wanted something that resonated with me so I could create awareness and capture people’s attention so they learn more about the disease.

 

Then I said, hey, this is a good way to incorporate things I'm passionate about into an event in June. And it was a way to help people participate in MG Awareness. My sister Jennifer - she's my biggest cheerleader. She helped me with the mermaid theme and incorporated the hashtags - #seemenotmg #sheliveswithitsodoi. I ask my friends, family and others to dress up in teal, use teal in a creative way, wear MG-t-shirts and wristbands, and they post as the various mermaids in the photos on Instagram and social media. You know everything in the ocean works together. Whales and dolphins have pods, and fish have schools, you know? My “mermaids” are my tribe, my pod, and school of support, helping me educate the community about MG.

 

MGFA: How have you kept the momentum going year after year?

 

Jessica: Well, it began with my close friends and relatives, and each year or so it got a little bit bigger. I see my wonderful godchildren and their parents supporting, then it is another friend, more family, a person I didn’t even know, and even my fellow MG advocates taking part. I saw the energy increase each year, and every year someone new asks about it. On the last Monday of June every year, during MG Awareness Month, I encourage everyone on Instagram and Facebook to go post.  I'm so excited about my Mermaid Mondays in June. But next year, I'm expanding Mermaid Monday to the full year. The annual Mermaid Monday event will still be held in June, but I'm looking forward to sharing all these opportunities where people can participate throughout the year.

 

MGFA: What has the Myasthenia Gravis Foundation of America meant to you?

 

Jessica: Oh, MGFA has meant so much to me in my life. When I first experienced symptoms and then later was diagnosed, I had no answers and nowhere to turn for information until I learned about MGFA. The foundation was the only organization that was able to get my parents information they needed because all of a sudden, their child had a rare disease.  

 

MGFA put them and me in contact with medical professionals and experts. For someone coming from a small town who had no idea about this disease, this meant everything in the world because we didn't have information that is critical to surviving this disease. That was 22 years ago. I am forever grateful to the MGFA.

 

This is why I completely support MGFA in every way, including the MG Walks and all events. I know that donations are important for treating the disease, and those living with the disease need the support and assistance that MGFA provides the community. I have seen the changes that have been made within the organization 22 years later. The strides and steps they have gone through. I participated in the virtual conference this year and that was amazing. I’ve participated in webinars and I’m looking forward to the MGFA Together We Stand event on October 10. I just love helping and being part of this community.

 

MGFA:  What advice would you give to those living with the disease?

 

Jessica: If I had to tell them anything. I would advise them to never lose their voice. Don’t be brushed aside but fight for yourself and your health. MG is big and varied. It is a big diagnosis. It makes big changes in your life, but you are still you. For me, life with MG has been about me using my voice for awareness, education, support and change. That's why I created the motto "see me not mg." I use my voice to dispel the many misconceptions about myasthenia gravis, and the quality of life MG patients can expect.

 

 So my advice is to never lose your voice. Speak your truths, ask questions, and require answers. We deserve the dignity of being treated as people not a simple diagnosis. There have been amazing advancements in the diagnosis and treatment of MG. Use your voice for awareness.  People with MG and the general public need to know about this diseases, but they also need to know about the amazing progress being made. MG is part of my life, but it is not my whole life. Be creative!

 

I'm on Facebook, Instagram, and Twitter. People can also follow me on Instagram and Twitter  @seemenotmg.  People can also visit my Facebook page www.facebook.com/seemenotmg for more information on how to participate in Mermaid Monday activities and donate to my virtual MG Walk. I create my own personal infographics and slideshows for people to share. I send out emails and encourage participation in MGFA events because I fell in love with the people in the MGFA community. They go out of their way to just show so much support. And remember, money is not so much about “money,” but its about supporting the organization to get to progress against the disease. I believe in physically, emotionally, and fiscally supporting every avenue of support for those living with MG, treating MG, and researching MG.