Being Rare Does Not Mean Being Alone

By Cynthia Wang, SRNA’s 2016 James T. Lubin Fellowship Recipient.
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I’ve always had a fondness for the quotation by Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” When I applied for the James T. Lubin Clinician Scientist Fellowship award, I had decided that my role in bringing change into the world was to dedicate my career to improving the lives of children and adults with rare neuroimmune conditions. It united my love for learning about people and hearing their stories, my interest in the complex interplay between the brain and the immune system, and my desire to provide comfort and expertise to those struck with these frightening and unexpected conditions.

During the two years of my fellowship, and over the last year and a half of my clinical practice, I have crossed paths with countless families who have experienced the grief and elation that accompanies this journey. First, the complete shock that you or your loved one has developed a rare, never before heard of condition. Next, the anxious waiting period in which small victories are celebrated with bated breath. When things go well, the ecstasy of regaining sight, the ability to walk, and clarity in thought. For some the roller coaster ride would seem to end here, but for many there are reminders that their life has been forever changed- the nagging pain, the unrelenting fatigue, the anxiety that the disease could come back and strip away more of one’s self.

For all these reasons, these conditions demand that we care. Rare or not, they have led to profound changes in the lives of many, and while we have learned much, so many fundamental questions remain. Why do people get these diseases? What can we do better to treat them? How can we improve quality of life even if we can’t erase the symptoms? I am grateful to be part of this small but committed community of citizens tackling these issues. By increasing awareness through education, advocacy, and research, we demand that others care as well, and let those affected know that being rare does not mean being alone.