Somebody recently asked me what the most effective treatment I have ever received for myasthenia gravis was…As a person who has battled the disease for over 35 years, my thoughts immediately went to plasmapheresis which is the treatment I’ve been doing every couple of weeks for the last 13 years of my life. But then a light bulb went off and I suddenly remembered back to a spring day my senior year of college when I hopped out of my car and yelled at a sorority sister across the lawn. I had just come back from a visit to the prosthodontist at the University of Iowa Hospitals and Clinics where I had had my final fitting for my new palatal lift. The entire 2-hour car ride back to Ames I tried to figure out how to drink from a straw while wearing my new palatal lift.
(Allison Foss, Gamma Phi Beta Sorority Composite Photo)
At this point, you may be wondering, what is a palatal lift? A palatal lift is a retainer type of device that is worn in your mouth and pushes your palate up, holding it in place to reduce hyper-nasal speech. Most of my life was spent with unintelligible speech because my palate was too weak to move, leaving space in my nasal passage when I spoke. I spoke quietly and a lot was misunderstood. Close family and friends would often interpret what I was saying which was a truly frustrating situation! It wasn’t until I was at a neurology appointment at the Mayo Clinic a few months earlier that they asked why nobody had ever thought of fitting me for one. I didn’t even know it was an option, but it was an obvious choice to get it checked out ASAP!
(Palatal Lift)
When I yelled to my sorority sister across the lawn, I watched her slowly pivot in wonder of who was shouting. She shrieked and screamed, running toward me with the utmost surprise. I finally had a voice! I could finally be heard! It is a moment frozen in my photographic memory.
Shortly after yelling her name, she paraded me through the Gamma Phi house to help me “show off” my voice, and then we went and visited friends at other houses so I could literally speak the good news.
(Allison Foss in front of Gamma Phi Beta Sorority House)
As weird as it was to grow up with a rare disease and how hard it was to often feel accepted and feel like I belonged, I will never forget the day I got my voice! So, if you want to know what the most efficient treatment for MY case of myasthenia gravis was, it was and has been my palatal lift. I can’t imagine life without a voice or where I’d be today without it.
The following blog post was written by Allison Foss, Executive Director of the Myasthenia Gravis Association.