My name is Mika Jayne Covington. I’m 29 years old and I live with an ultra-rare disease called cystinosis. I am also a transgender woman and my pronouns are she, her, and hers.
Cystinosis is a metabolic genetic disease that afflicts more than 2,000 people worldwide. The disease impacts all the organ systems in the body, leading to kidney failure, muscle wasting, diabetes, blindness, pulmonary deficiency, hypothyroidism, and neurological damage.
I was diagnosed with cystinosis at about 10 months old. I’ve had 13 surgeries because of the disease, including a kidney transplant in 2013.
Life with cystinosis and being an openly transgender woman has been difficult. I have felt alone and isolated. I’ve felt this way because many of my peers have no idea what it’s like to constantly fight to just to be called the gender that I am. My peers also don’t know what it’s like to frequently fight with insurance companies and pharmacies, to take over twenty medications, and to spend nearly a third of my life in hospitals, clinics, doctor’s offices, and pharmacies.
Coming out as a transgender woman on October 11, 2009 was the scariest and hardest task I have ever done. It was scarier than living with cystinosis. I knew I would face rejection from my family and friends, and it would mean facing a hostile society with the possibility of discrimination and harassment.
A decade since I have come out as a transgender woman, I still face many of the same struggles, and I am fighting many of the same battles. Over this decade, I was able to socially transition, but I’ve been unable to access the medically necessary gender affirming surgery that I need to treat my gender dysphoria. Because of my gender dysphoria, I struggle to form the most basic human relationships and especially intimate relationships. I also have this immeasurable and indescribable self-hate. I hate that my body does not align with who I am.
Unfortunately, being transgender increases the risk of being assaulted, and in 2015 I was sexually assaulted.
The assault, the election of Trump the following year, the feelings of isolation, and my gender dysphoria exacerbated my depression which led to harmful and destructive behaviors. I felt so bad that I did not have the will to continue to fight. I was exhausted from the daily battles of trying to get the care and medications that I need, the battles proving my gender, and to be treated with dignity and respect. These struggles broke me. I tried to cope by taking my own life. I felt that I would be able to finally be at peace. I wanted to rest. I couldn’t see a future where I didn’t experience the daily struggles and where I would finally be normal.
I recognize that I am not the only one to have many of these struggles. But there was no organization within the cystinosis community that specifically addressed the needs of adults living with cystinosis. However, there are two organizations in the United States that do provide great support for parents and families of children with cystinosis.
Therefore, I knew that I wanted to help others and use what I learned from my own experiences. Therefore, my friends Rebekah Palmer, Katie Swafford, Mandy Dufrane, and myself decided to build a new organization for the cystinosis community, called Next Generation of Cystinosis (NGC).
NGC is a non-profit 501(c)4 (pending) volunteer-run organization founded in 2019 and incorporated in 2020. NGC’s vision is to be an organization run by and for adults (18 years and older) affected by cystinosis (with support from allies). NGC’s mission is to create safe spaces for those adults affected by cystinosis to have open and honest dialogue about the plethora of issues that affect them.
The following highlight key elements of the NGC’s purpose:
- To provide social support to adults affected by cystinosis;
- To provide emotional and psychological support to adults affected by cystinosis;
- To provide medical and scientific education on cystinosis to adults affected by cystinosis; and
- To lobby for the interests of those affected by cystinosis on the federal, state, and local level.
Mika Jayne Covington is 29 years old. She was diagnosed with cystinosis at around 10 months old. She is the President of Next Generation of Cystinosis. She is a central committee member of the Polk County Democratic Party in Iowa. She is a college student at the University of Iowa studying psychology and German. She is a sexual assault survivor, a human rights activist, a feminist, and a social justice fighter. She is also a blogger and you can find her blog where she shares her story here: www.mikacovington.com
