Rare is Worth it: How the Cystinosis Research Network Family Conference Renewed my Spirit

I attended the 2017 CRN Family Conference in Utah this July.
As someone living with rare disease who is older, (I am in my early 30’s with a disease which just a short time ago, did not let individuals reach adulthood). I find that community, who I relate to, has become increasingly important. I had not realized how important rare disease family interaction is for all members, until I recognized the negative feelings I had hidden about my own self worth.

I am a writer, a speaker, a philosopher, and a poet.

These are things I started practicing as young as age twelve because my soul gravitated to them. As a younger college student, the standard direction for a young woman was transferring these talents towards becoming an educator.

Because a teacher’s schedule consists of getting to school earlier than the students and often staying later in the afternoon, I wondered if I could handle this physically. I already struggled attending school with the shorter and more flexible hours of a student, because of the complications of living with a rare disease.

After graduation, life seemed at a standstill as I only took volunteer tutoring opportunities. I published two books during this time, but increasingly began to feel I had no purpose in living as most adults my age were making money at jobs, and pursuing active careers.

Then I went to Utah July 13-16. I spoke, along with a group of rare disease peers about our visions for the future, about our passions, about who we are. I sat down. A lady approached me with her card and said, “You are the most eloquent young woman I have ever heard speak, what college have you attended?” I wanted to burst out laughing for I had graduated from an unaccredited Bible college and possessed a degree that had no earthly value. Then I wanted to cry because for the last seven years post graduation I had felt like I was nothing in regard to anyone doing anything worthwhile in this world.

I got my spirit renewed at that conference. I started climbing out of the box that told me I was nothing because my skills and talents weren’t making x number of dollars an hour, that box that had told me I could only be what the piece of paper I held in my hand told me, that box that told me because my body held me back, no one would pay attention to the skills and talents I possessed.

The rare disease community truly needs a bigger voice and a greater capacity to include more than just newly diagnosed children.
As a group advocating for inclusivity, we must include parents, siblings, older adults, friends, and loved ones.
Let’s renew the spirits that dwell among the rare. You all are worthy.


To learn more about cystinosis, check out our partner the Cystinosis Research Network here.

Rebekah Palmer

Rebekah Palmer

Rebekah Palmer is the author of two books published by Aneko Press: A Letter to my Friend and A Letter to Myself. She also has poetry included in the anthology Strength: Lives Touched By Cystinosis. She is a rare disease news curator for her blog Cystinosis Society. Please visit her author profile on Goodreads and her author page on Facebook called Jairus Daughter to ask any questions or to reach out.

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