Have you ever felt lost, isolated, sad and depressed? Are you struggling to live your fullest life?

I know have, and I am.

My name is Mika Jayne Covington. I am 28 years old. I am a transgender woman and my pronouns are she, her, and hers. I live with an ultra-rare disease called cystinosis. I am a survivor and I live with mental illness. *I will talk more about my experiences being a transgender woman and being a survivor*

I have felt lost because of living with the unknowns of an ultra-rare chronic disease. Specifically, I am charting a new course in the life journey of a cystinosis patient. I am part of the first generation of cystinosis patients to live into adulthood. I have no idea what lies ahead for me. What I do know is that the ultimate path of cystinosis is death and with death the unknown of what comes after.

I have felt isolated because cystinosis is an ultra-rare disease. Thus, there are very few adults living with the disease. Frequently, living with a disease similar to cystinosis creates a feeling of isolation because many of my peers have no comprehension of what it is like to constantly fight with insurance companies and pharmacies, to take over twenty medications, and to spend nearly a third of my life in hospitals, clinics, doctors’ offices, and pharmacies.

Because of living with cystinosis I have felt sad and depressed. Cystinosis stops me from doing many of the activities I would like to do, such as working on political campaigns, finishing college, and traveling the world. The disease stops me from being spontaneous or just being a young adult. I feel depressed because I feel that I was robbed of my childhood.

I have struggled not only because of the many side effects of cystinosis, but also the side effects of the many medications that I take. I live with frequent headaches, nausea, vomiting, dizziness, shortness of breath, and more. Many of these side effects interfere greatly with my quality of life and my ability to complete daily tasks.

Unfortunately, there is no organization within the rare disease community that specifically addresses the needs of adults living with cystinosis. There are two organizations in the United States that do provide support for parents and families of children with cystinosis.

Therefore, my friend Rebekah Palmer, myself, and others have decided to build a new organization for the cystinosis community, called the Next Generation of Cystinosis.

Next Generation of Cystinosis (Next-Gen Cystinosis) is a nonprofit volunteer-run organization. Next-Gen Cystinosis’s mission is to create safe spaces for adults 18 years and older affected by cystinosis to engage in open and honest dialogue about the plethora of issues that affect them.

Next-Gen Cystinosis’s purpose is to

• provide adults 18 years and older affected by cystinosis support in dealing with the issues and concerns that specifically affect them;
• to provide emotional and psychological support and education;
• to provide evidence-based, medically accurate sexual and reproductive health education; and
• to provide guidance on where to find information and resources to adults affected by cystinosis.

 

Rebekah Palmer is a senior studying Professional Communication and Emerging Media at the University of Wisconsin – Stout. She holds a bachelor’s degree in secondary Christian education with English and business emphasis. She currently writes from rural Wisconsin, and her articles have appeared on the rare news website PatientWorthy. She volunteers in her local community as a tour guide in historical buildings and participates in the performing arts. She has three books available to date on Amazon and/or Aneko Press. Her author’s information can be found on Goodreads. Her rare disease blog curation address is www.cystinosisociety.wordpress.com.