In Barb’s Own Words….
My Ribbons of Hope adventure has begun, with special help from the Huntington Society of Canada. What is my dream? To raise much needed public awareness and support for Huntington Disease (HD) and Juvenile HD (JHD). And so a few weeks ago I thought, well what can I do?
And so finally a few weeks ago, I realized, the Huntington Society already has a beautiful Amaryllis pin, but it’s so tiny, and even when I wear mine, nobody notices it. And so I thought, how can I make it big, bold, and beautiful? Well I thought, I like to sew, I can make ribbons, a blue ribbon for HD, and a purple ribbon for JHD, and I can place the beautiful Amaryllis pin in the centre. Next I contacted the Huntington Society of Canada, and I told them my dream, for the news anchors across Canada to wear Ribbons of Hope during the month of May, to help create public awareness of HD/JHD, and also to highlight some of the wonderful HD events happening all across Canada this month.
Why is this so important to me? When I first got HD, I wasn’t even too sure of what I had, and what was happening to me, but I soon found out, and the stories are tragic. Huntington disease is hereditary. That sounds simple enough, but it isn’t. Some people that are lucky enough to not inherit the gene, get to be the ones to care for and watch several siblings pass from HD. And mostly, I know a young woman who lost her entire family. They did not know HD was in the family until after they had their two young children, and within 10 years, she had lost both her young boys and her husband, to JHD and HD. This is only one story, but the one that has impacted me the most.
HD can be like having a mix of Alzheimer’s, Parkinson’s, and ALS, and it effects each person differently. Some people will have chorea, some will not, and some people will have some form of psychiatric symptoms, but to different degrees. There is a huge stigma with Huntington’s disease. Many are scared of losing their jobs if it is found out it is in their family, because of psychiatric symptoms, decision making skills, etc. Many are scared if they let the secret out, that their children won’t be able to get life insurance. And so, I just want to help take away the feeling of secrecy that so many feel, and create support and understanding.
I hope for someday for people to be wearing Ribbons of Hope all across Canada, to show that people understand and care, and because I know, that when someone is walking down the sidewalk, and they see someone wearing a ribbon, it will cause them to look up and smile, and then they will feel hope.
And if you’d like to follow my campaign of Facebook, I’ve created a special page just for that:
Again, thank you so much everyone,
Sincerely, Barb Marshall