Please follow up with primary care…. How many times have you heard those words from a specialist when you are having issues? This week alone, I got four messages back from various specialists with that very message. In the meantime, I am up until 4am every night because I cannot sleep. My tolerance is low and my energy is exhausted.

While I understand everything takes times with research and official guidelines, it can feel frustrating and overwhelming as a patient, bouncing from doctor to doctor, hoping someone will take the time to really listen to me. My life is literally in these doctor’s hands.

In the meantime, I am re-evaluating as I have seen things change on a dime for us with Myhre. I want to make sure to enjoy life to the fullest for as long as I can. Goal one has been met – I joined a choir. Goal two is a road trip. I don’t care where. Just a road trip. Goal three is spending as much time as I can with my friends and family just enjoying life. I don’t want the moon. I just want simple things.

One of the things giving me energy right now is the work we’re doing at MSF that is entirely focused on the needs of our community. I’m heading up a new committee called Patient Advocacy and everyone at MSF is aware that feelings of helplessness, not knowing where to turn, and wanting answers are commonplace among Myhre families. I’m excited to tell you that we have a long list of activities that are underway and that over the summer you’ll be seeing new content, new initiatives, and updates to help. They will also all be available in multiple languages too. In the meantime, please know you are never alone and reach out to me with any concerns. We want to help. pschultz@myhresyndrome.org

Have a peaceful week!
Patti