Progressive Political Organizing & Cystinosis

As you may be aware, I live with an ultra-rare disease called cystinosis. Cystinosis is a metabolic genetic disease afflicting 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 around 10 months old. Little did I or my family know that I would face a lifetime of poking, prodding, nagging, cutting, and examining. And because of living with cystinosis, I have been hospitalized many times in my 27 years on this Earth. I have even had about 13 surgeries some of which were major including my kidney transplant and some that were minor. Furthermore, several times throughout the year I have appointments with specialists including nephrology, neurology, cardiology, pulmonary and others.

Recently, I decided to do more for the cystinosis community and therefore I am volunteering with the Cystinosis Research Network (CRN) and joining their group Future by Design (FBD).

FBD is a group of adults living with cystinosis who’ve come together to pave a brighter future for the children, teens, and adults touched by cystinosis.

Along with my participation in FBD, I plan to continue to be an advocate and work to push people in power to recognize the importance of fighting for those who don’t have a voice and fight for equality.

However, living with cystinosis means that to create change and find a cure for cystinosis, I must be my own advocate and to do that takes time, effort, and money.

One example is an upcoming conference with the Cystinosis Research Network and Future by Design next year in Philadelphia.

At the conference, I will learn new research findings, receive updates from cystinosis organizations from around the world, have the opportunity to participate in research studies, and interact one on one with many of the world expert clinicians treating and researching cystinosis.

Nonetheless and in addition to my work with the FBD and on cystinosis, I plan to fight for Medicare for All, transgender equality, and Free College for All.

Therefore, I humbly ask you to make a small donation to help further my work on these causes.

To make a contribution please go to my gofundme page or if you would like to become a sustaining member of my work and make a small monthly contribution please visit my patreon page.

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Future by Design & Progressive Political Change

Hello Everyone,

As you already are aware, my name is Mika Jayne Covington.

I am 27 years old (which is an accomplishment in itself because of the cystinosis) and I live with cystinosis. I was diagnosed with cystinosis at around 10 months old. Cystinosis is an ultra-rare genetic disease that causes cells in the body to crystallize and die. Cystinosis slowly destroys the organs in the body especially the kidneys, eyes, liver, lungs, muscles, and brain.

Recently, I decided to do more for the cystinosis community and therefore, I am volunteering with the Cystinosis Research Network (CRN) and joining their group Future by Design (FBD)

FBD was created to help make the cystinosis journey easier. FBD is a group of adults living with cystinosis who’ve come together to pave a brighter future for the children, teens, and adults touched by our rare disease.

One major project of FBD is their Outreach program that works to connect individuals and build relationships within the cystinosis community.

Along with my participation in FBD, I plan to continue to volunteer and work for progressive political change.

As a transgender person, I plan to continue working to end anti-LGBTQIA+ bias and helping fill the education gap in Iowa on LGBTQIA+ issues and history. I plan to fight for Free College for All, Medicare for All, and transgender equality. 

Volunteering on these issues takes time, effort, and money. One example is an upcoming conference with FBD in Philadelphia and I will need to pay for travel. This is just one example of my need for support.

Therefore, I humbly ask you to make a small donation to help further my work on these causes.

To make a contribution please go to my gofundme page or if you would like to become a sustaining member of my work and make a small monthly contribution please visit my patreon page.

Mika for State Central Committee

I am running for the Iowa Democratic Party State Central Committee (SCC).

I am running because I have seen that the party still has many areas where we can improve. For example, the party treats those with money differently than those without money. We have fundraisers and events that exclude people who don’t have $50 to $75 to give to the party to participate in these events. Additionally, we seem to favor our incumbents and claim that primaries and open discussion of the issues are somehow divisive. Frequently, I hear party officials discourage the discussion and challenge to status quo.

I firmly believe that if we want change to occur we must step up to the challenge and create the change.

I believe that we need to consider and include ideas from everyone, not just those who have been involved in the party for years. As we know we must make our party more open and inclusive and we must face the fact that a greater number of young people and the next generation of voters are independents. Therefore, we need to listen to those voters especially since we rely on them to win general elections.

I know we need to reach out and bring back the 4.4 million Obama voters who voted in 2012 but stayed home in 2016. Of these 4.4 million, 43 percent were not contacted by any candidate in 2016 because it was believed they would be reliable Democratic voters.

I understand that we must update and modernize the way we are campaigning. We must put more emphasis on digital advertising and social media. We must follow the example of those already using social media and live streaming technologies to reach people. As Senator Bernie Sanders has done with live broadcasting his town halls. We are able to reach millions more than conventional online videos. We could use this tool to live broadcast many of our events and especially our fundraisers which in turn would include more people.

I believe that I am uniquely qualified to be on the SCC because of my work on issue and advocacy organizations such as the Cystinosis Research Foundation and the Cystinosis Research Network. And because of living with cystinosis I learned at an early age to be organized, to advocate for myself, and to be responsible especially when it came to managing my health and navigating health care coverage.

I hope I can count on your support at the Iowa Congressional District 2 Democratic Party Convention.

If you have any questions or concerns contact me at mika.j.covington@gmail.com

Nebraska Medical Center and the Dominant Narrative

I live with a very rare genetic condition called cystinosis which slowly destroys my organs including the eyes, kidneys, liver, muscles, and brain. Because of this, I needed a kidney transplant in 2011.

At the time, I lived in Republican-controlled Nebraska where I went to the Nebraska Medical Center to get the transplant. However, the dominant narrative got in the way. This narrative says that society does not need to treat transgender people with dignity and respect.

On several occasions, while sitting in the waiting room at the Nebraska Medical Center Holly Fox, the transplant nurse coordinator would call my name. Instead of calling me by the name I identify with or the gender pronouns I prefer she called me Michael and Mr. Covington. Many of the staff there fought with me over their issue with the dominant narrative that says those who are different do not deserve to be treated as a human being. They even made excuses for their behavior and they claimed that it was illegal for them to use my preferred name and pronouns.

There was little for me to do because I accepted the dominant narrative and let them demean me.

The dominant narrative led to me not fighting when the Nebraska Medical Center staff treated me like shit and refused to do the kidney transplant. They even pretended to get ready for the surgery by actually scheduling it and having me go through all of the pre-operative appointments. Then at the last minute, they canceled the surgery. All of this happened even though I had a living donor ready to do the transplant. All they needed to do was perform the damn surgery.

These medical professionals obeyed the dominant narrative that said I am not worthy of life.

Because I did not get the treatment that I needed I was forced to have a less effective treatment that did not benefit me and in the long run hurt me.

Thus, because I did not get the transplant I needed I was forced to go on dialysis to extend my life. And because I did not get the transplant several complications occurred that was 100 percent preventable.

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I had many surgeries that I did not need. Some of the surgeries were dialysis catheters that were placed in my chest for access to perform dialysis. I experienced many complications that led to me going to the hospital and having even more procedures. It led to needing to switch to another form of dialysis which meant more surgeries.

Everything I went through for three years was 100 percent preventable. None of this benefited me and I could have died waiting for the transplant.

Because of the medications, surgeries, and dialysis, years may have been cut off my life.

Who benefited from this and from me accepting the dominant narrative? The hospital, the medical supply companies, the pharmaceutical companies, the insurance companies, and everyone who made a profit off my suffering. These people and institutions made hundreds of thousands of dollars off the unnecessary medical procedures and medications.

This happened because of the dominant narrative and because I and others were not fighting it.

Nevertheless, I have the power to change this and so do you. Together we can win the fight for universal health care as a human right and we can win basic human rights for all people regardless of your gender identity or gender expression.

Take action now! 

You are not alone

This year has been very difficult. I had a serious mental health even followed with several suicide attempts. I was hospitalized and afterward, I moved to Ankeny to live with friends and to attend a fifteen-week intensive outpatient therapy group.

I am living with severe depression, more specifically I was diagnosed with major depressive disorder (MDD).  According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), MDD presents with depressed mood or a loss of interest or pleasure in daily activities for more than two weeks and impaired function in social, occupational, and educational activities. Additionally, MDD is a significant mental health condition that can affect every aspect of life.

Living with any mental illness makes life difficult. It doesn’t make you weak it makes you stronger. I am not proud of my suicidal thoughts and actions, but they did happen. The important thing is that I got help and it indeed helped.

I know that I am not the only person with mental health issues. I am like many other people and especially like many people living with cystinosis or any other rare disease. At times, I wish that I did not have cystinosis or that it would just go away. I would like to experience life without having cystinosis. I want to be normal.

As you may be aware, I am working on my Bachelor’s degree in psychology and I am considering getting a Ph. D in psychology afterward. I decided to go into psychology because when I was growing up with cystinosis, I did not have a mental health professional who really understood what I was going through. I felt that many of the mental health professionals I saw lacked an understanding of what it is like living with a rare disease and being transgender.

Thus, here I am working to become the professional that I was looking for.

Therefore, I plan to work within the field specializing in rare diseases and/or organ transplantation. I want to be there for young people like myself.

If you are having suicidal thoughts go to the nearest Emergency Department. You can also call the National Suicide Prevention Hotline at 1-800-273-8255, the Trevor Project at 1-866-488-7386, or you can call or text me at 1-712-314-8258.

Please remember that you are not alone. Please reach out for help. No one can do this thing called life alone.