From the time I was three years old, my life has centered around horses. When I was diagnosed with my rare disease, diffuse scleroderma, my first thought was “will I still be able to ride?” I was 28 years old, had the horse of my dreams, and was terrified that everything was about to change. Little did I know, horses would become both my personal saving grace and my gateway to helping others with rare diseases.
Scleroderma is a chronic, progressive, rare disease in which the body produces too much collagen. As a result, scar tissue builds up all over my body, inside and out, where no injury is present. For me, scleroderma effects my skin, digestion, breathing, energy, flexibility, and ability to deal with the cold. A constant measurement for my wellbeing with my doctor at Johns Hopkins is “how often are you riding?”. Riding my horses, Pip and Storm, has helped me to maintain my flexibility and strength in the face of progressive illness. They keep me active on days where my fatigue would otherwise keep me in bed. Horses are intuitive and caring towards humans, and my girls always seem to know when I need an extra nuzzle or an easier ride.
Within the past year, I have been blessed to be able to share the incredibly positive effects horses can have on the body and mind with children and adults with rare diseases in my role as Therapy Program Director of Ridgebury Farm and Stables, a hippotherapy farm in Ridgefield, Connecticut. Hippotherapy is occupational therapy, speech therapy, or speech therapy on horseback. It combines the positive effects of these therapies with the unique movement of the horse for maximum benefit to the patient. For many of the children, because the therapies are done on horseback, it does not feel like “work” to them. This is a welcome reprieve for so many children with rare diseases who spend so much time in doctor’s offices and therapies to keep their disease at bay. Since the horse is such a motivating factor in this therapy, progress is often made quickly, and I am truly astonished at the strides I have seen clients make in their time here. Further, the connection between our clients and the horses they ride is profound. Seeing the joy in their eyes when they get a nicker from their favorite horse or give their horse a treat after a great session makes what we do so worthwhile.
Rare disease day for me means another great opportunity to bring awareness to scleroderma and other rare diseases. I believe that awareness and education are keys to helping rare disease patients, as far too many people even within the medical field are unaware of the issues those of us with rare diseases deal with on a day-to-day basis.
My plan for Rare Disease Day is to paint my grey horse, Storm, like a zebra and wear my pink zebra onesie for pictures on social media to help raise awareness! I also might treat myself to a nice dessert in honor of the day.