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). 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. 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.