Join me in supporting the MGFA Walk!
I walk because Rachel couldn’t.
When I was 14 years old, I was sitting in my High School English class and noticed I could look at my notebook and the blackboard at the same time. I showed this “trick” to my mom and immediately she scheduled an appointment to see the eye doctor. It was the first Neuro Ophthalmologist I saw to say that I have MG. From then on, my parents took me near and FAR to find out more about MG, the treatment and if there is a cure.
MG was very rare to see in a teenager, and there were no support groups for patients my age. The treatment is different for every person and there is currently no cure. I have been fortunate to have a support system to help pick me up (mentally and physically!), medications that I had to fight my insurance for, and have much needed surgery. There are so many people who cannot get the necessary treatments to be able to do everyday things that we take for granted like walk, talk, and have a drink of water without spilling or choking. For more than 14 years, I have struggled to MG and I have the bruised kneecaps to show for it.
2004 – Diagnosed with Ocular Myasthenia Gravis
2006 – Surgery for Sternotomy Thymectomy (Pretty awesome 6” scar!)
2007 – Short remission before my double vision came back. Began regular IVIG treatments
2008 – Began having weakness in my legs
2009 – Weakness spread to my arms and hands
2010 – Walking and climbing stairs became more and more difficult
2013 – Started losing my speech
2014 – Could no longer walk, talk, or hold a knife and fork. Emergency PLEX treatment
2015 – Regained my speech, by still have a hard time walking
2018 – Lost speech again, weakness continues. One more PLEX session
2019 – Began Soliris treatment, which is a new IV medication for MG. It has dramatically helped my ability to walk, talk, and hold a pen again, but it is VERY expensive, which is why most people with MG cannot have this life saving medication.
Today – Working and growing stronger
Tomorrow – With your help, find a cure!
Each MG case is unique, which is why it is called the “Snowflake Disease.”
By supporting the MGFA, you can help find a cure and give patients young and old the knowledge and support they need to stay strong.
The MGFA is the only national volunteer health agency in the United stated dedicated solely to fight against Myasthenia Gravis.
Together we can Make a Difference!
If you think this page contains objectionable content, please inform the system administrator.