Do you know how hard it can be to smile with Myasthenia Gravis? I smile with my eyes
The MG story of a patient advocate
You know that we at FindMeCure are constantly eager to talk about people with various conditions who have inspired us because they have turned their patient journey into a way to help others.
It’s now time to share Allison’s story as we truly admire her passion and dedication to make a difference to those who need support. Allison Foss has been an Executive Director of the Myasthenia Gravis Association since 2017. She brings to the MGA her passion for community spirit and recognition of those in need.
She is no stranger to Myasthenia Gravis. Diagnosed at age 5, she is one of those rare MG patients with the MuSK antibody, the rarest kind of MG. It requires a completely different type of treatment than other forms.
When she was only five years old, her parents noticed that she had a crossed eye. They took her to the doctor’s office and the PA working that day had knowledge of myasthenia gravis. They immediately referred her to a Neurologist and a diagnosis happened very quickly.
What happened after the diagnosis?
As a child, I was treated with Mestinon and very high doses of prednisone. Because I was on such a high dose of prednisone I was the fattest kid in school. In the 8th grade, they tapered my prednisone because it was stunting my growth. Then I just used Mestinon. My freshman year of college I had a crisis and began doctoring at the Mayo Clinic in Rochester, MN. While doctoring there they were able to figure out I had the MuSK antibody and started me on 3.4 DAP (Firdaspe). It changed my life! My eyes opened so much and I felt good. In 2008, I experienced another crisis and began Plasmapheresis treatments as well as started taking Immuran. It was determined that the Plasmapheresis would be the best course of action for me and I had a fistula put in my left arm. I’ve been getting Plasmapheresis treatments every 3-4 weeks for the last 11 years! I tried Rituxan for 8 rounds of infusions and my B cells are now at O.
I feel fortunate to have found a treatment that works for me and I don’t want to rock the boat too much!
Can you describe a day with this condition? What’s the worst about it?
I try to live as close to normal as possible. I work full time as the Executive Director of the Myasthenia Gravis Association. I love to socialize with my friends, attend sporting events, work in my yard, hang with my dog, cook and travel. I generally work 8-10 hours from Monday to Friday and sometimes on the weekends depending on what events we have going on. If I have energy, I try to get some sort of exercise whether that is walking on my treadmill, walking my dog or going to Curves (which is a circuit gym for women). On days with low energy, I prefer to be at home so I can rest if needed. I would say the worst thing about this condition is the fatigue I battle with MG. I no longer can do late nights and tire easily. I like to keep up and MG puts a damper on that.
What do you wish your family and friends of people with MG knew?
I wish that people understood how unpredictable MG is. One day you feel great and then next day the wheels are falling off the bus and you just don’t feel well. I feel like your credibility gets put in question with people who don’t understand because you aren’t faking it but there is just a general lack of understanding and education. One of my other big pet peeves is people who tell you to smile or ask you why didn’t you smile in that photo.
Do you know how hard it can be to smile with MG? I always tell people I smile with my eyes.
How did you decide to get involved in patient advocacy?
I went to college to obtain a degree in Child and Family Services and worked for nearly 20 years supporting individuals with developmental disabilities. When I started getting plasmapheresis treatments, something in me changed and I really wanted to give back to those in my own community and raise awareness of myasthenia gravis. In 2011, I started the MGA Triple Crown Showdown which is our 5K Run/Walk, Mile Mosey and Tot Trot which raises funds for those impacted by MG across Missouri, Kansas and NW Arkansas. I worked on the run for years as a volunteer and then went on the Board of Directors for the MGA.
When the Executive Director position opened at the MGA, it seemed like a natural transition for me.
I have learned more in this role than I thought possible. I thought I knew everything about myasthenia gravis. Turns out, I was wrong. This job has been very humbling for me.
What are the main questions and problems that people who reach you out have? How do you help your members and followers?
The cost of healthcare and insurance is a common theme and issue. Also, finding care and the right specialists. We try to assure every patient and family member that we come into contact with that we are here for them and here to help and if we don’t have the answer we will try to assist them to find it. We work with some amazing professionals, neurologists, nurses and specialty pharmacies here in the heartland and connecting our patients is key for them getting the care they need to live life to the fullest.
Are patients and caregivers asking you about clinical trials and what options are available?
Yes, they are because it’s an exciting time for the MG Community. And I tell people it sounds funny to say that but it’s the truth. There are currently 6 clinical trials at KU Medical Center and for us to have that in our backyard for our patients is exciting. We recently had an educational seminar regarding clinical trials where a patient, neurologist and multiple pharmacy companies shared experiences and updates. Putting this information in front of patients so they have the opportunity if they desire is important. Life is full of choices and just because you have a chronic illness doesn’t mean your choices should be limited.
The collaboration with FindMeCure will enable our members, all across the heartland, the opportunity to have the resource readily available. They will be able to login on the computer and search their area and see what interests them.
At FindMeCure we are extremely happy to have Allison’s support and willingness for collaboration so we can inform the MG community in the heartland regarding available treatment options in clinical trials.
Allison works hard as her own advocate, and stands up to help others too. Feeling sorry for oneself isn’t healthy, so she doesn’t give in to that. Instead, she turns it around.
I take it and make it a positive thing in my life. I have a passion for non-profits. I want to give back.
Research for Myasthenia gravis won’t rest. There are currently 35 clinical trials worldwide exploring innovative treatments and procedures. If you are also battling this condition, make sure you acquaint yourself and learn what is currently being developed. One of these research studies might bring your life-changer and your real smile on your face.
Interview and article by: