Advocating and making changes in the diagnosis and treatment of Myasthenia Gravis
I'm feeling like advocating more for Myasthenia Gravis Awareness and Understanding. Without our contributions to research, community outreach. Educating others and the medical field of what our life is like to live day to day with mostly an invisible, will we start opening more doors to earlier diagnosis, better medical breakthroughs and a better life for everyone. It is challenging when this disease takes away our energy, verbal cohesion at times to explain our experience to those who can help and our confidence often as it may deteriorate our muscle and expand our waistline with the medication prescribed, like steroids. It decreases our esteem as we change from who we used to be, fully capable to grieving the inability to even show up some days. We need to find our voice, well I know I need to find mine. There are opportunities available for us to contribute in a few ways, like sharing our story that I still struggle to do or being part of a group of like individuals. I found a place I keep my records for free. They give a bit of compensation, but our life's are better understood by science without disclosing who we are. It has made a difference for me because I had to file disability and the information is contained in an organized timeline. It helps me recall important information to share with my doctor and I can see a pattern of illness dating way before I was not able to work. If you would like more information about this contact me. I wish all of you a wonderful day and week to come. May good health be with you. Believe things will get better. The mind over body is powerful. Be well.
Carla
Thank you for sharing! I to have struggled with this and continue to do so. I spent a lot of time actively seeking opportunities to share my journey, or simply educate those within the medical community at Medical appointments. I’ve been fortunate, and that is there. I’ve had the opportunity to speak in front of several pharmaceutical companies this past year and share a little bit about the journey that we face on a daily basis. That being said the compensation, if any is not significant. I am hopeful, though, in that more and more agencies are looking for people with MG to share their stories. it often feels like it’s slower than we want it to be, but keep the faith and keep on tucking on and sharing your story as it has value for all of us. So ❄️ team member Deborah ❄️
Thank you Kaitlyn!
I agree, the mind over body is powerful - thank you for sharing this sentiment. Thank you so much for sharing your story with us. We are so glad you have found our community! Best wishes, Kaitlyn (Team Member)
