How This Group is Leading Kids with Cystinosis to Self-Advocacy

The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life.

However, the age at which this happens, and how a child celebrates their rite of passage into adolescence, depends entirely on where they live and what culture they grow up in. But what if there’s more to the equation?

What if the rite of passage includes self-advocacy of a disorder like cystinosis?

Cystinosis is a rare disease that is typically diagnosed prior to age two. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine.

Cystinosis is treated symptomatically.

If a young adult is not under the watchful of caregivers, then the responsibility to be acutely aware of his/her health status shifts to the first person—the ME, MYSELF, and I. The journey of self-advocacy begins.

Self-advocacy is:

  • learning how to speak up for yourself
  • making your own decisions about your own life
  • learning how to get information so that you can understand things that are of interest to you
  • finding out who will support you in your journey
  • knowing your rights and responsibilities
  • problem solving, listening and learning
  • reaching out to others when you need help and friendship
  • learning about self-determination

Every person who struggles with this condition, or any other chronic condition, will need to find their way to self-advocacy. So not matter your condition, no matter your age, and no matter where you are in life, self-advocacy can be an important part of your life.

To help you on this cystinosis self-advocacy journey, click here.


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