NEOH Face of HD
NEOH Face of HD
My name is Diana. I'm 33 years old. I first heard about Adult Huntington's Disease when I was 16 years old and my mother was diagnosed at age 47 in 1997. Prior to her positive test for HD my mother had been misdiagnosed for many years as bipolar. It wasn't until her test results came in that we figured out it had been HD all along. At this time her chorea was just beginning and I discovered that I was "living at-risk" of inheriting this disease.
As the years progressed my mom's HD got worse. She went from her own apartment to assisted living (with use of her own car) to living with my sister to living in a nursing home where she has now currently spent the last 8 years of her life. I began educating myself about HD so I could better explain it to friends & family. It wasn't until I started doing some digging that I discovered something I didn't know: children can get HD too.
I started attending my local HDSA support group and got involved in the community. As one of my own personal side projects I created an awareness page called "We Wear Blue & Purple". My plan was to share support images like the ones I saw flooding my newsfeed on Facebook during other awareness days & months. But when I looked for images on "HD support" there were very few to choose from. And absolutely nothing for JHD except one tiny purple ribbon. So, back to the drawing board I went.
I began talking to the creator of JHDKIDS.com (Jacey Mukka) who has JHD. I asked her why there were no images for JHD's purple ribbon when I had seen a couple with a blue ribbon for Adult HD? She explained to me that JHD was considered as a branch of HD & therefore did not technically qualify for it's own ribbon. She also told me that one of her goals was to get JHD recognized as it's own ultra rare disease so that children with JHD could be eligible for a ribbon of their own & possible life saving trials. This inspired me!
I have since started a Facebook group with a friend of mine, Renee Humphrey, which is now 1,500 strong. Our members come from all walks of life and from all across the globe. Some have JHD in their families, some have HD in their families, and some have both. I figured, who better to run my ideas by than the JHD/HD population at large? I would post my awareness images there and the ones with the most positive feedback were then officially shared on my awareness page: We Wear Blue & Purple.
The purpose of my page is not only to spread awareness but also give others a way to support their loved ones who are struggling with HUNTINGTON'S.