What Does the Struggle for a Cure Look Like to SRNA?

What does the struggle for a cure look like to SRNA?

As an organization that exists to support and care for those with rare neuroimmune disorders, we continually seek to find a cure. That progress in medicine has not happened yet—but in the meantime, our greatest ally is each other. To support our members where each are at, regardless of diagnosis, level of disability, or amount of life experience means running those support groups, telling those stories, recording that podcast, and planning that event. There is no cure, but there is community and connection. There is a hand reaching out, even if you do feel lost.

To me, the struggle for a cure often looks like love. There are doctors we’ve trained up who do what they do for the community out of love for people, out of empathy for the state of our condition. There are doctors who have chosen to integrate themselves with our community who care deeply about those with these conditions, and they care about the cure, even when they know it will be an uphill battle, considering the cost of funding these research programs and the complexity of these disorders. Regardless, they shoulder the burden. They love the people they serve, even when it’s hard.

The struggle for a cure also looks like people like me, who have had these rare disorders and are sick of it, but carry on with life all the same. People who choose to live as best they can, even when it’s hard and even when it’s nothing like the way it was before, represent the struggle for a cure. There’s beauty there, in reclaiming one’s life after receiving one’s diagnosis, even when it is painful.

There are also people who do not seek out the cure, accepting things for the way that they are. Even if you are not looking for the cure, reclaiming and recognizing the knowledge and experience you’ve gained due to your diagnosis can be beautiful, and life without a cure will be discussed further in this magazine later on.

In the meantime, the following stories reflect different aspects of the struggle for a cure, including the struggle to decide to survive and live a life even without it.