Did you know that it is National Family Caregivers Month? Caregivers are the unsung heroes when it comes to myasthenia gravis management. This November, we decided to feature a dedicated caregiver in our community, Amy Bruns. A nurse by day and mother of a daughter with myasthenia, Amy shares her experience with us in today's blog post.
Meet Amy and Sarah Bruns
What is your name? Where are you from?
My name is Amy Bruns. I live in Springdale, Arkansas.
What is your role in the MG community?
I am the mom of a 13-year-old daughter, Sarah, who was recently diagnosed with MG. In the fall of 2019, I noticed that Sarah’s left eye was turning inward and she was experiencing double vision. After extensive testing, we were “officially” told in early 2021 that she has MG.
Can you describe your role as a caregiver?
Being the mother of a MG kid is my main role as a caregiver but I have also been a RN for 26 years. I feel like my nursing education and experience helps me to navigate the healthcare system easier at times. Since starting this journey, I have realized how important it is to stay up to date on the disease. I feel like being Sarah’s advocate and supporting her emotionally as well as physically is a very important part of my role as well.
How long have you been a caregiver?
Since Sarah’s initial symptoms in 2019 until now.
What drove you to support the MGA community?
When we were told of the possibility of MG, all I could remember was the small amount I learned in nursing school. I was doing research and came across the MGA and saw that they offered new patient packets. I asked for a packet to continue my research but got so much more! After receiving the packet and speaking to others within the MGA, I came to realize the great benefit of the support from this community.
What are your favorite aspects of being involved with the MGA?
The support we have received from the MGA has been helpful beyond words. Everyone at MGA is so supportive and truly cares about us. I feel that we have made some very strong, personal connections within the community. Having the ability to connect with others who have been and are going down the same roads as us makes this journey so much easier.
What have you learned as a result of being involved with the MGA? Has myasthenia gravis, the MGA, and/or MG patients impacted your own life?
MG has definitely impacted the lives of our whole family. Sarah has been incredible during the process of getting a diagnosis and while we are trying to find the right treatment options for her, Sarah’s attitude and strength have left me in awe many times and her positive attitude makes being a caregiver so much easier. I have learned that being involved with the MGA means never being alone and that someone will always be there for support.
What are you looking forward to next year?
Sarah will be having a thymectomy soon so I look forward to great outcomes for her MG in 2022. I would also like to become more involved with the MGA and give back to the community that has given us some much support and care over the last couple of years. We are so thankful for everyone we have met through the MGA!