Hello, my name is Donna Jones and I am an adult living with spina bifida. When I was growing up on the Island of Guam, I was the only person with spina bifida. My family and I had no idea that support mechanisms for people with spina bifida existed.
Coping with the challenges of spina bifida can often times feel isolating and overwhelming but there are many support mechanism that exists. Spina bifida clinics can serve as one of these support systems. These clinics often held once a month bringing together the various medical specialties needed by those with spina bifida.
In 2005, I was lucky enough through my work on Capital Hill to discover the Spina Bifida Association. The Spina Bifida Association and its network of chapters serve as the strongest support system that exists. Together, they are the only National Voluntary Health Agency dedicated to improving quality of life for those living with spina bifida.
The Spina Bifida Association and its chapters provide programs such as educational conferences, online e-communities and support group services. These programs can help people living with spina bifida connect on a local level, across the nation and even internationally.
Through my involvement in this Spina Bifida Association, I've become more connected with my peers and I'm more aware of medical advances and research done in spina bifida. The dedication and passion of the Spina Bifida Association have inspired me to become both a leader and an advocate for the spina bifida community. Finding the Spina Bifida Association has opened my eyes to a whole new world of medical information, friendship and support and basic advice on living with spina bifida, some of which I would like to share with you in my next segment.
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