May is HD/JHD awareness month...so put on your purple and blue armor, my warriors! This is also my birth month, which makes it feel that much more like it is my mission to spread awareness. Spreading Awareness is deeper than wearing T-Shirts, bracelets and doing walks. It is doing those things so that people will ask questions and we can educate them. Many people in the HD/JHD community do lots of charity work to better the outcomes of our families.
Currently, we have filmmakers, book authors, police educators, researchers, nurses, doctors and social workers all working to shine a light on the subject and unlock clues towards better management and hopefully someday a cure. It is my personal mission as an RN, author, mom to gene positive sons and caregiver to help other caregivers make it through the storm that can sweep through families when they are flailing in the dark.
My goal is to help caregivers manage the health of their charge through complete understanding of exactly what the symptoms look like and how to manage them and also to help lift their spirits and keep them encouraged to hang in there. Thorough understanding of the stages, transmission, CAG counts, medications, counseling, research opportunities, support groups and using a COE is how a family survives the often tornado-like lifestyle of being an HD/JHD family.
I also want to stress the importance of bipartisan advocacy in writing to State Reps, Senators, Congressmen and signing petitions for laws that will improve health care for our loved ones. So my bravest warriors, let them hear us from the rooftops the entire month!