Inspiration
for the International Conference for Limb-Girdle Muscular Dystrophy. Jane addressed the researchers in April at the most recent International Conference. Scientists from all over the world gather in Charlotte to discuss theories and practices that work and don’t work. Much collaboration has come out of these conferences. We are very proud of the work our lab does to promote collaboration in the research world. Several of the researchers expressed to us how impactful it is to their work to share the human side of the disease with them. A cure, for any disease, is not about fame, notoriety or money but rather about forever changing the lives of those affected with an incurable disease. Jane does not want to be treated differently. She rarely complains publically about what is going on with her personally. Every day brings challenges for Jane. Things you and I take for granted are exhausting and sometimes daunting tasks for her. Brushing your teeth, getting out of a chair, lifting a book bag off the floor, drying your hair, climbing stairs, and getting in and out of a car, all of these actions are difficult and exhausting for Jane. She takes medicine to help her but it is by no means a cure or even a viable
treatment for the disease. Because Limb Girdle Muscular Dystrophy is an “orphan” disease there is very little research on effective treatments. Jane takes steroids to help with the inflammation of her muscles. She also takes heart medicine to maintain the squeeze strength of her heart. Because of the steroids Jane has chronic stomach pain. Some days it is so debilitating she can’t get out of the bed, but most days she just suffers through. The heart medicine makes her feel a little dizzy and occasionally her heart races. The other
Jane at Misty Meadows farm participating in the Mighty Riders program.
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