It was a great day of awareness, fundraising for important resources for those living with MG, and such great support in the MG Community. Keep the momentum going! All fundraising pages will remain open through December, so there is still time to reach all of our goals. Reach out to your family, friends, and coworkers and tell them all about your great experience at the walk (be sure to show them all the photos!), and encourage them to support you. Follow up and thank all those that did donate, and please contact the MG Walk Office for any tips on post-event fundraising.
Thank you all for an amazing day, a great event, and for coming together and doing all we can to reach the ultimate finish line…a world without myasthenia gravis!
As a teen, Becky was diagnosed with juvenile rheumatoid arthritis which eventually went into remission in her mid-twenties. She felt really well after going into remission, until about 3 years ago, she was experiencing different symptoms. Work was taking a lot more stamina than ever before. She found the need for more rest and naps and eventually developed a cough that was exhausting. Her mother would mention a drooping in Becky’s eyelid, but Becky remembered having a bit of a droop for some time. This all started to cause real concern, so she went to her doctor and was put on asthma medication for the cough. Following up 6 weeks later, the cough wasn’t resolved. By the end of October 2014, Becky started experiencing weird sensations in her extremities and her face would feel tingly. Double and blurry vision started to occur which really scared her. After her doctor ordered more tests that did not indicate anything specific such as multiple sclerosis, she was referred to a neurologist. At that appointment, the neurologist did a history and examined her and then said, “I’m almost certain you have Myasthenia Gravis.” While waiting on antibody tests to come back, which ended up returning as seronegative, she was put on Mestinon and responded really well. IVIG was added a few months later, which provided even further improvement and ability to function for a couple of weeks until the next infusion. Although CT Scan showed a normal thymus, Becky did have her thymus removed in October 2015. Upon removal, her thymus was quite enlarged with hyperplasia and she has no regrets going through the open sternum surgery. A remission has not been achieved yet, but there has been a slight improvement of her symptoms and her IVIG treatments are now a little further apart.
Throughout her diagnosis, Becky realized she needed to be her own advocate and wishes she had been more of one for her mom when she was diagnosed. She just simply did not know enough about MG, and now it’s her mission to educate others and inspire those with MG to be their own advocates and work with doctors on the best treatment personally for you.
When first diagnosed, Becky searched for information and support online and is very thankful for helpful and informative forums on Facebook. One night she posted a question and received a private message from another MGer in her own little town she resides in who then added her to the Utah support group Facebook page. As a result, she ended up meeting support group leaders, Theresa Collins and Kelly Odermott at a dinner they organized for people with MG where the annual MG walk was discussed. Right then, she knew she wanted to be a part of this great event. The 2015 Utah Walk was scheduled for 3 weeks after her thymectomy and she wasn’t sure she would be able to attend, but was certainly going to try. Becky was feeling great at that point and was able to not only be at the Walk but she was able to walk with her husband, dad, and grandkids. She was overwhelmed at how great the Walk event was and has been encouraging others to join her ever since. This year she is excited to be the Utah MG Walk Local Hero and will attend with her husband, dad, daughter, son-in-law, and 2 grandkids and hopefully other extended family, co-workers, and friends.
Becky is transparent about her disease around the hospital where she works as a marketing director, and feels this has helped to inform the medical community a bit more. She has been educating the ER staff to make sure they all know what to do with MG patients that may come through the door and has succeeded in making sure all know what MG is and what to do. She wants to change how medical students are studying MG and how they are exposed to it, as she feels many are misdiagnosed initially and this can help improve on that.
To those with MG, Becky encourages you to become informed and don’t be afraid to ask questions. Don’t be afraid to question the decisions the doctor may make and be a part of the discussion on the course of treatment best for you. Make sure to do your research from reputable sources such as the MGFA and the information they provide, and be sure to seek out the support groups in your area for help. Take one day at a time…it’s an ongoing battle! Never give up hope!
Not sure where to begin? Check out our fundraising tools to help you raise MG awareness and increase your fundraising!
On MG Walk Day, we gather to celebrate those we love who live with MG, commemorate the research we’ve helped to develop with funds raised!
Share your fundraising page and links to donate via email and on your social media accounts. If you have checks or cash funds to turn in, please let us know and we can help you add them to your fundraising page. Checks may be mailed to the address below. Please be sure you’ve written your team name in the memo field!
MG Walk Office
1707 N. Randall Rd, Suite 200
Elgin, IL 60123
Checks should be mailed to: