In honor of September being Dystonia Awareness Month, the WEGO Health guest blogger this week is Pamela Sloate who is sharing a post she wrote about why Dystonia awareness matters.
“Why Dystonia Awareness Matters”
When chronic illness strikes, it ushers in a host of issues that impact the entire family. My dystonia was a case of childhood onset, I find it difficult to recall time before dystonia. My parents faced an uncertain journey and the anguished realization they couldn’t offer many answers. My brother watched me wrestle with a relentless disorder we didn’t fully understand. As for me, life became a continuous struggle to level the playing field and fit in with my peers, who didn’t know how to react to my all too visible condition. Neither did I.
Diagnosis only took a year, rather remarkable for a rare condition like dystonia that remains widely mislabeled. Even in this day and age, pinning the tail on the dystonia donkey averages 5 years. Back in the 1970s, identification of my condition presented a double-edged sword, as dystonia was barely a speck on the medical landscape. We lacked foundations advancing medical dialog let alone clinical research. In the planning of the initial international dystonia conference, question number one became how to fill the room.
The first movement disorder neurologist my family encountered – at the time, one of only a handful of U.S. doctors qualified to pinpoint dystonia – declared my case a lost cause. While my parents had secured a diagnosis, they had also reached an impasse. Notwithstanding a lack of patient advocacy organizations to guide their efforts, my parents persisted. Three years into my dystonia, through the initiative of an up and coming neurologist, they found my meaning med, a Parkinson’s drug with heavy side effects I’ve reluctantly “accepted” in the interest of mobility. Meanwhile, my parents committed themselves to transforming a small corner of the world called dystonia. If there were no way forward, then they would construct a road.
With the hindsight of 40+ years of living history, I see how far we’ve traveled and the long trip ahead. I also evince a better understanding of the crucial role we play as patients. Yes, dystonia can be severely debilitating and attract undue attention but action is empowerment and the imperative of awareness is a siren’s call that beckons us to chime in. It’s really quite simple. Awareness matters to improve time to diagnosis and gain funding for research. Awareness maters because we need more doctors investigating the medical underpinnings of dystonia. Awareness matters as a bridge to human understanding. Awareness matters as the foundation of our hope.
Pamela Sloate is a health activist who devotes herself to an array of awareness efforts. She also moderates a patient support group, advocates for the dystonia community, and advances fundraising. Pamela holds degrees from Brown University and NYU School of Law, and her career spans law, marketing and non-profit administration. She can be found blogging about the twists and turns of life with dystonia at www.dystoniamuse.com. To commemorate her parents’ pioneering contributions to dystonia awareness and medical research, Pamela has established a fund in their honor in collaboration with the Dystonia Medical Research Foundation. Donations can be made to The Martin & Roberta Sloate Dystonia Research Fund at www.dystonia-foundation.org/sloatefund.