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!
This was the first time Ophelia was introduced to MG, like many, having never heard of it prior to this diagnosis. She was sent to a neurologist at Lutheran General to undergo a series of tests to be confirm that it was, in fact, myasthenia gravis. So, she underwent tests, scans of her thymus gland, an excruciating nerve stimulation test, and a Tensilon test. With the Tensilon test, she immediately reacted and it was as if all her symptoms were suddenly gone…so the diagnosis became very clear. She was put on a regimen of medication, such as high doses of steroids, Mestinon, and really at the time, that was all there really was to treat her disease. But shortly after, towards April/May of 2000, she unfortunately got worse. Constantly in the hospital with exacerbations, they finally started Ophelia on plasmapheresis. This treatment worked well, but the effects didn’t last long enough, so the decision was made to remove her thymus gland. When they went in to do the surgery, it was discovered her thymus was very enlarged and was adhered to some of her organs. Unfortunately, this lead to complications with the surgery and a very rough recovery. Over the years, Ophelia was on many different treatments, such as Cellcept and Mestinon, which weren’t working as well, an increase in prednisone, and IVIG, which wasn’t working as well as the plasmapheresis did. She had a few crises where she had to be intubated, with the last one being 4 years ago when there was a huge concern as she was having difficulty breathing on her own. She had hope of being in a trial for rituximab , but kept getting denied by her insurance who wouldn’t cover the treatment. It wasn’t until she went into crisis one more time and had a bad reaction to her plasmapheresis (which in the past had proven to be a good treatment for her) that she found out her husband’s insurance would cover the rituximab. She is now symptom free today because of it.
When she first became sick, Ophelia did a lot of research as her diagnosis was not relatively well known. She wanted to find out everything and anything she could and contacted the MGFA to send her literature and resources so she could educate herself and her family on what could be expected. Once the Internet continued to grow and information was becoming more readily available, she joined forums and online groups and met many people around the country who had MG and shared their stories. She is now the one in the groups that helps and mentors those newly diagnosed and seeking peer support.
Ophelia knows just how important it is to be involved in the MG Walks, and is honored to be the 2016 Northern Illinois MG Walk Hero. Through the Walk, she has met and become friends with so many people. She has also lost people she’s met at the Walks and knows she needs to keep raising funds and awareness. The money generated from the Walks helps to fund research and keep finding new and better treatments, especially for those that don’t respond to what is out there, as she has experienced. As the Walk Hero, her purpose is to educate others. There needs to be a lot of education and awareness, to the public, and also to hospitals, especially in small towns, that still don’t know what MG is or how to handle a crisis. She has even heard many overseas on social media that they don’t have nearly the technology and advancements needed for MG. She wants to keep sharing her story, keep honoring the friends fighting and the friends she’s lost. She wants people to know it’s more than just a Walk…it’s extremely important the funds raised and the resources they go towards.
For those going through their own diagnosis, Ophelia offers these powerful words of advice: Take one day at a time. Don’t give in to your disease. Do not let it win. And, above all, do not give up hope. You may have MG, but MG does not have YOU!
She’s excited to participate again in the Northern Illinois MG Walk on Sept. 25 with her husband, son, daughter, future son-in-law, little grandson, her siblings, and her friends!
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
If you have questions or want to know more, contact us today:
Checks should be mailed to: