This Sunday is National Parents' Day, and what better to celebrate the day by honoring two people that have played such an important role in the life of our Executive Director, Allison Foss, as well as the growth of the MGA? Today we recognize Craig and Barb Foss aka, Allison's parents. Craig and Barb are a great example of how important a support system is and moreover, how critical it is to have a positive perspective and proactive approach toward MG.
Meet Craig and Barb Foss:
What are your names? Where are you both from and where do you currently reside? Our names are Barb and Craig Foss, and we are the parents of Allison Foss. We both grew up in different parts of Iowa and met at Iowa State. After finishing our schooling we settled in southeast Iowa in Fairfield, a town of about 10,000 and only an hour south of the University of Iowa hospitals and clinics in Iowa City.
What are your roles in the MG community?
We have three adult children of which Allison is the middle child and the only one affected by MG. We also have no extended family members with MG. She acquired her MG at the age of 5 as an autoimmune condition, though it was not diagnosed as being hereditary. We had not heard of MG previous to hers so we have learned about it along with Allison while supporting her whenever there has been a medical procedure, doctor’s appointment, crisis situation, or special occasion in her life.
Tell us a little bit about your daughter’s journey with MG and what that has been like for you as parents. Or, what has your journey as parents been like, loving someone who lives with MG?
Allison’s condition began on the morning she got up and came into the kitchen with one eye crossed. We had had no indication before that anything was out of the ordinary. We started by going to our local doctor to which we were sent immediately to the U. of Iowa where she was treated in the pediatric neurology department with generalized MG until she turned 18. Most of the treatments prescribed didn’t change anything for Allison. She continued to worsen, struggled with her speech, her facial expressions, her swallowing, her general health and stamina, in addition to the strain it put on her emotionally. During her freshman year at Iowa State University she had a crisis and was hospitalized in Ames, Iowa. Her neurologist told us we needed to travel to Mayo Clinic right away as he was sure she did not have MG!
A prominent Mayo Clinic neurologist, Dr. Andrew Engel, who had discovered recently at that time that there were many kinds of MG, soon diagnosed Allison as having MuSK-positive MG. It was so rare that she was only the third person ever to be diagnosed. They began a new and different regimen of medications and she began to improve slightly, allowing her to finish her degree and have a great college experience.
Meanwhile, a friend and speech pathologist had attended a convention and heard about a palatal lift hooked onto your back teeth which held up the soft palate to improve the quality of speech. Before Allison’s first college job interviews, we were able to have a lift fitted at the University of Iowa Dental clinic. It has made a huge difference in the quality of her life since. Her goal for most of her adult life has been to educate others about MG so it was very necessary to be able to communicate.
You both are a huge part of Allison's support system. What does support look like for the two of you?
Although, we live 4 hours from Allison, we make trips to Kansas City whenever she needs to have our help with MG-related treatments or to attend MGA events. We haven’t needed to help with her daily living needs up to this point as she is very independent as well as positive and creative about making the very most of her life. Her many friends are a great support system and she feels free to call on them if needs arise. One of our main ways of helping in the last 10+ years has been transportation to and from her plasmapheresis treatments as she cannot drive on the day of the treatment.
Do you have any advice for parents that have a child with MG?
We didn’t find it to be very different from parenting children who didn’t have MG. As a family, we tried to be supportive of the needs any of our children had. Learning as much as you can about the disease and it’s variations has been helpful. Probably, stressing a positive attitude about everything has been as helpful as anything. It is easy to get down or feel sorry for yourself if you don’t remain positive. We stressed the importance of helping others also and looking at the bigger world picture of life as you can always find someone worse off than you are!
From your perspective, how has your daughter’s MG evolved from when she was a child to where she is today?
As a child, Allison was guided by our decisions, but by learning as much as possible about probable symptoms, possible treatments and likely progression, Allison has taken her rare disease journey and information to a different level where she can now advise and educate others as well as be proactive in making her own medical decisions.
What is one thing you wish people understood about your daughter’s diagnosis?
Known as the snowflake disease where each person’s symptoms can be very different, it can affect a person differently each day so it is at times difficult to know what someone is feeling and experiencing. Receiving kindness, helpfulness, understanding and positivity is extra important for those with MG. They may be putting on a happy face, but feeling tired, miserable, having trouble breathing or swallowing, speaking, or with movement. We often hear people say to her that they hope she feels better. A better comment might be to let her know you would like to help and ask what you can do.
How can organizations like the MGA continue to support people with MG?
We see the mission of the MGA as helping people with MG make connections with others who have MG, answering their questions by educating them, and providing support by making them aware of what possible treatments and home adaptations are helpful. Providing a view of possibilities can be life changing as it was invaluable to us to have our friend recommend the palatal lift which we were unaware of. It is a journey that no one wishes to travel, but it is possible to live a great life with MG!