A few years ago Happy Mango Beads got involved in 7,000 Bracelets for Hope. The goal was to raise awareness and funds for over 7,000 rare diseases. All of which lacked awareness and the necessary funding for research, translating to no cures for most of these obscure diseases. The bracelet project was fun. It was the first time I tried my hand beading. I still had no true understanding of what it meant to have such a rare disease … that is … until I got sick a year later and was later diagnosed with Dystonia. It wasn’t until I went back and looked at the 7,000 Bracelets for Hope website that I discovered my own diagnosis fell under their list of rare diseases. This is now the second time we are raising funds to help rare diseases, this time more directly – for Dystonia.
I am proud that the business I work for takes an interest in a cause so personal to me. When I first got sick, I became isolated as my life came to a halt. Dystonia is the name of a movement of the muscle. It is characterized by painful, involuntary muscle spasms, twisting and shaking. It was several months before I found a combination of medications and Botox injections to better manage my symptoms but, no cures are available. I began to feel sorry for myself. Then I remembered a jewelry artist by the name of Lisa Hamilton who also lives with Dystonia. You can check out her Etsy store here: www.etsy.com/shop/beadsoul
Inspired by Lisa’s work and strong character, I reached out for my beading supplies and began making jewelry of my own. My Dystonia affects my hands so I couldn’t do much intricate work with seed beads but I found I could easily use larger beads and basic tools. Beading gave me purpose as my treatment being was dialed in, and it gave me something to do during some of my darkest days. I have learned to live life under the new terms my body sets for me.
So many of us with Dystonia would love more awareness, funding for research and ultimately a cure for this debilitating disease. You can help by purchasing anything from our blue page and 10% of your purchase during the month of September will be donated to the Dystonia Medical Research Foundation.
Learn more at: www.dystonia-foundation.org