Mika’s Cystinosis

Mika’s Cystinosis

By Mika Covington

At age ten months, I became very ill and rushed into the Emergency Room. The doctors there diagnosed me with dehydration and failure to thrive. In the ER, I went through a system of tests including bone marrow taken from my hip. The doctors concluded from the tests they performed on my already weak body that I had Nephropathic Cystinosis. This was a very scary moment for my family, they had no idea what Cystinosis was, let alone Nephropathic Cystinosis. Later that evening, the doctors took my parents aside and explained to them what the illness was and that they did not know enough to effectively treat it; the doctor told them the news that they did not want to hear, that I might not make it.

In the next couple of years, my family met Dr. William H. Gahl. I owe my life to Dr. William Gahl from the National Institutes of Health. I began seeing hir in 1992. Dr. Gahl shortly before meeting me discovered that Cystagon and some other medications are successful in treating Cystinosis. I started the Cystagon treatment in 1992 during my first visit to the NIH. It is because of his research that I am still living. These medications are what keep me alive. The first group of doctors I saw when I was ten months old did not believe I would live to be six years old. They were right; I would not have made it if I did not have the Cystagon.

Nephropathic Cystinosis has become part of my life. I look at Cystinosis as a tool. I have been able to educate myself on so many things that most people do not understand because of this illness. I understand all the facts of all the medications in my treatment, the effects of Cystinosis, what Cystinosis is, what Creatinine is, and so much more. I have been able to see places that not many people ever seen because of the Cystinosis. For instance, I have been to National Institutes of Health in Bethesda, Maryland more times than I can count. I have seen that place grow from  building 10 being only one building, to now three buildings they call building 10.

Cystinosis has done many great things for me. I became more mature then the rest of my class in middle school and high school. I have become very open-minded. I try to never judge anybody because of hir actual or perceived race, religion, sex, sexual orientation, gender expression, gender identity, mental and physical ability or disability, physical attributes, etc. I have held the belief that I should never judge another human being. We all are humans, we all have issues and problems, and we all make mistakes.

Other positive aspects to having Cystinosis is that I am able to go see places that not everyone are able to see or go to. I have been to many states, to different hospitals. I have been to San Diego to visit some doctors that specialize in the Psychology of Cystinosis patients and I always fly to Bethesda, Maryland to go to the NIH. The NIH is the lead research facility in the Nation.

The negative aspects of having Cystinosis are that I have been to so many hospitals that I have lost count of them. I have been touched by the hands of so many medical professionals that now I try to tell them what to do, or when they are about to take my blood I tell them what arm is the best and what vain they should use. Now, when I go in to have rounds of medical testing done I tell the technicians not to waste their breath I know what they want me to do, I know what is going to happen, and I know all about the scans. All of the scans that I have been through have caused me to be exposed to more radiation then any average human would go through. I use to have blood tests every six months to check up on my kidney function. Then it got to every three months and now it is like once a month.

With Cystinosis, I have to take all sorts of medications, which make me smell badly some days. Many of those days have been when I have school, and then I am harassed and bullied throughout the day.  I always get hurt from the bullying and harassment I went through, although I knew that the kids were wrong because I did take baths and brush my teeth. I realize that I had unavoidable odor because of the medications I had to take. Thus, I was able to teach some of my fellow students about my illness and that the odor was because of my medications.

Additional, problems I have had include; issues with medical insurance and I will continue to have issues with insurance because Cystinosis is a life threating illness. I will always need to see doctors and have many medical tests done on me yearly. Cystinosis is downright expensive. Right now, I do not have medical insurance. I have applied for Disability and Medicaid, but time is running out. I am becoming sicker. I have about two months left of medications and then I am out. I need to go in and check up with a nephrologist but because I do not have insurance, hospitals do not want to see me as a priority so I have to wait another week.

The first day that I went in to the Social Security Office to apply for Disability, they did not take me seriously. The social workers that I talked to thought I was making it all up. Well, at least that was before they saw the amount of medical records I have. Then they believed me. The social worker told me that he would make sure personally, that he got all of my records to the proper person as soon as possible. After that day, I have been in and out of both the Social Security Office and the Nebraska Medicaid Office trying to get them to speed up the process. I as of the time of me typing this still am waiting for Disability and Medicaid to make their decisions.

I am now 19 years old. I am a transgender-genderqueer woman, and my name is Mika Covington (My legal name is Michael Covington). Cystinosis has had a great impact on my life good and bad. Cystinosis has given me the strength to stand up for persons with disabilities, persons with Cystinosis, and for my civil rights; I am part of the LGBT (lesbian, gay, bisexual, and transgender) Community. I am currently working on the Iowa Pride Network’s College Leadership Team. I help run the Iowa Pride Network’s Regional Southwest Iowa Gay-Straight Alliance Coalition. I have done volunteer work with GLSEN Omaha (Gay, Lesbian, and Straight Education Network). During my senior year of High School at Millard South High School, I reintroduced a Gay-Straight Alliance Club. I then ran the club as President that school year. Quiet recently I participated in the Pride Rally outside the Omaha City Council Chambers in support of the City Ordinance that would have added sexual orientation, gender identity, and gender expression to the city’s non-discrimination laws. Even more recently, I went to Ames, Iowa to take part in Iowa Pride Network’s Queer Leadership Summit.

Before I came out as Transgender, I worked on advocating for the Forgotten Children of Uganda. I posted pamphlets in local stores and restaurants with information on them to where you can donate to help those poor children. I even created a couple presentations that I gave during my Advanced Speech class in 10th grade. I have created presentations for Speech Competitions on what Cystinosis is, the different types of Cystinosis, and how to combat Cystinosis. The presentations also included information on the Cystinosis Foundation and Cystinosis Network.

Recently I have been to the NIH in Maryland. While I was there, I was told that my kidney function was 21% and my creatinine was 3.5. Approximately 3 weeks later, I ended up in the ER at the Nebraska Medical Center. I went in because the whole day I was laying on the couch feeling like crap. I did not eat much that day. I was extremely thirsty the whole day, and I noticed my skin color was off. It was around 6:30pm that I told my roommates that I needed to go into the hospital as soon as possible. At the ER, I found out that my kidney function had dropped from 21% to 18% within 3 weeks and my creatinine levels were 3.9. The doctors there wanted to put me on dialysis but because I did not have any insurance, they sent me home instead.

Currently I am living with my Grandmother just outside of Malmo, Nebraska. I moved to her place because I had to quit my job; I just could not work anymore. I am so tired and sick to do any more work or do any standing for long periods. I am staying here until I get Disability and then get a one-bedroom apartment in Omaha so I am closer to the Hospitals there. I am hoping that I will get a kidney for my Christmas gift or one for my birthday gift in February.

I am Mika Covington

My name is Mika Covington, and I am the 99! I was born in Omaha, Nebraska, and I am genderqueer. I became an activist when I was in high school and was treated like shit for being queer.  I always have looked at the world with open eyes because of the treatment I received in high school.

I began my activism when I worked to ensure all students at the high school I attended were protected under school policy. I worked on this with other students to form a high school gay-straight alliance. I did this by first asking my principle if I could start a new school club and was denied.  Once I was denied I choose to start a student/staff petition in support of the GSA where I collected several hundred signatures and brought that petition to my principle which he then sent me to the activists director which told me I would have to wait a year before officially creating a new student club.  The following year I went back to the activists director and he gave me a form to fill out and then told me the board of directors would have to approve the club and then I did not hear from him for months until he called me into his office and told me that the school cannot have a GSA that year and that I should try back next year. I decided to contact the American Civil Liberates Union of Nebraska, I informed them of my situation, they intervened, and the school allowed me to form a GSA.

A couple months after the GSA was formed the GSA decided to start a campaign called, “My Life, My Rights” where we worked to get the Board of Directors to pass an inclusive anti-bullying and anti-harassment policy. We ended up failing.

Later that year, we held the first National Day of Silence at that school. It was just amazing. Almost half of the student population took part in the event by either wearing pink tape or a NDOS sticker. There were also armbands, pins, and speaking cards for those whom wished to take the pledge to not speak the entire day. The school officials even recognized the event and asked teachers to allow the students to not speak in the class.

Later, I joined the Iowa Pride Network and volunteered for their College Leadership team where I helped run the Iowa Pride Networks Regional Southwest Iowa Gay-Straight Alliance Coalition. I did that for about two years then decided to work full time for Forward Equality. Forward Equality is the brand new LGBTQ civil rights/economic justice non-profit organization I created in early 2011 with several other friends.

At Forward Equality, I am the Executive Director and acting President. Forward Equality has several current projects. The first and the most important is our project to pass the nondiscrimination ordinance that would protect persons based on their gender expression, gender identity, and sexual orientation.  Forward Equality’s next project  is our economic justice projects where we will work with local occupy groups.

My more personal life, I was born with Nephropathic Cystinosis. Nephropathic Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine. It is a genetic disorder that typically follows an autosomal recessive inheritance pattern. Cystinosis is the most common cause of Fanconi syndrome in the pediatric age group. Fanconi syndrome occurs when the function of cells in renal tubules are impaired, leading to abnormal amounts of carbohydrates and amino acids in the urine, excessive urination, and low blood levels of potassium and phosphates. Cystinosis is a rare genetic disorder that causes an accumulation of the amino acid cystine within cells, forming crystals that can build up and damage the cells. These crystals negatively affect many systems in the body, especially the kidneys and eyes. There are three distinct types of cystinosis each with slightly different symptoms: nephropathic cystinosis, intermediate cystinosis, and non-nephropathic or ocular cystinosis. Infants affected by nephropathic cystinosis initially exhibit poor growth and particular kidney problems (sometimes called renal Fanconi syndrome). The kidney problems lead to the loss of important minerals, salts, fluids, and other nutrients. The loss of nutrients not only impairs growth, but may result in soft, bowed bones (hypophosphatemic rickets), especially in the legs. The nutrient imbalances in the body lead to increased urination, thirst, dehydration, and abnormally acidic blood (acidosis).

By about age two, cystine crystals may also be present in the cornea. The buildup of these crystals in the eye causes an increased sensitivity to light (photophobia). Without treatment, children with cystinosis are likely to experience complete kidney failure by about age ten. Other signs and symptoms that may occur in untreated patients include muscle deterioration, blindness, inability to swallow, diabetes, and thyroid and nervous system problems.

The signs and symptoms of intermediate cystinosis are the same as nephropathic cystinosis, but they occur at a later age. Intermediate cystinosis typically begins to affect individuals around age twelve to fifteen. Malfunctioning kidneys and corneal crystals are the main initial features of this disorder. If intermediate cystinosis is left, untreated, complete kidney failure will occur, but usually not until the late teens to mid-twenties. People with non-nephropathic or ocular cystinosis do not usually experience growth impairment or kidney malfunction. The only symptom is photophobia due to cystine crystals in the cornea. It is currently being researched at UC San Diego, The University of Michigan, Tulane University School of Medicine, and at the National Institutes of Health in Bethesda, Maryland as well as at Robert Gordon University in Aberdeen and in Sunderland, UK as well as the Necker Hospital in Paris.

Cystinosis is normally treated with a drug called cysteamine (brand name Cystagon).[6] The administration of cysteamine can reduce the intracellular cystine content. Cysteamine concentrates inside the lysosomes and reacts with cystine to form both cysteine and a cysteine-cysteamine complex, which are able to leave the lysosomes. When administered regularly, cysteamine decreases the amount of cystine stored in lysosomes and correlates with conservation of renal function and improved growth.[6] Cysteamine eyedrops remove the cystine crystals in the cornea that can cause photophobia if left unchecked. Patients with cystinosis are also often given sodium citrate to treat the blood acidosis, as well as potassium and phosphorus supplements. If the kidneys become significantly impaired or fail, then treatment must be begun to ensure continued survival, up to and including renal transplantation. (Information was copied directly from Wikipedia because my medical records were used in creating these documents.) There are about 50 individuals in the United States with Cystinosis. There are around 2,000 worldwide with Cystinosis.

I am currently in stage five of Nephropathic Cystinosis and I am on hemodialysis. I was scheduled for a kidney transplant on for December 20, 2011 but some complications came up and it was canceled. These complications are that I now have cardio problems. Thus, I have a new medication. I am working with the UNMC Nebraska Medical Center Lied Transplant Center to get the transplant rescheduled for this summer.

OccupyEquality Nebraska/Occupy Omaha

“News Release – For Immediate Release

Occupy Omaha to Hold Solidarity Rally
Action in Solidarity with Occupy Oakland

Contact: Inter-Occupy Communication working group of Occupy Omaha about this press release at occupyomahasolidarity@gmail.com

December 10, 2011 – Omaha, Nebraska – Occupy Omaha will be holding a rally this upcoming Monday, December 12th 2011 near the Monument to Labor sculpture at the Lewis and Clark landing at 515 N Riverfront Drive in Omaha, Nebraska. This event will  run from the hours of 4-7pm.

Occupy Omaha would like to challenge local media to attend and be a part of this event.

This release has been approved by the Occupy Omaha General Assembly December 10, 2011 for immediate release.”

OccupyEquality Nebraska members will be in attendance at this Solidarity Rally.  The community meeting (GA) has not approved a proposal to endorse this event for that the event was created after the last community meeting and there was not support to hold a special community meeting to cover this event.

About OccupyEquality

OccupyEquality networks gay, lesbian, bisexual, transgender, intersex, queer, questioning and our allies in the Occupy Revolution in city-to-city, state-to-state, coast-to-coast, north-to-south, country-to-country, continent-to-continent from the Occupy Streets to the Occupy Net to unify the Declaration for Unconditional Constitutional Equality. OccupyEquality unites everyone with a Facebook Group and Page, on TwitterYouTtube channel, Live StreamUstreamYahoo GroupGoogle Group, with real-time  online face-to-face OccupyEquality Meetings.

Bloggers from Queer and LGBTQ Occupy Alliances are welcome to blog here to Demand Unconditional Equality.

Email OccupyEquality [at] live.com

OccupyEquality Kansas