My name is Mika Covington and I live with Cystinosis. I am 23 years old and hope to live 23 more. I was born with Cystinosis and diagnosed around age 10 months. Cystinosis is a rare metabolic disease that causes cells to crystallize causing early cell death. This happens because the amino acid cysteine accumulates in the cells, but has no transporter out. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles, and brain. Cystinosis is a progressive disease. As I age, the disease affects my body further, inflicting damage to multiple organ systems. The medications I take only slow the progression of the disease but there is no cure. I have already been through the kidney failure, next up is thyroid insufficiency, calcifications on my brain, muscle wasting, and swallowing difficulties.
Cystinosis has always been a struggle for me and my friends, and my family. It of course continues to be a struggle. It has caused a lot of trauma not only to me but also to those who care about me. I cannot even comprehend how difficult it was for my family to get the news of my disease and how it will eventually take my life if we do not find a cure.
A year ago, I had a living donor kidney transplant at the University of Iowa Hospitals and Clinics (UIHC). At UIHC, I received excellent care and treatment. I personally feel they are the best in the Midwest. I was on dialysis for almost three years. I began dialysis in May of 2011, when I was a patient at the University of Nebraska Medical Center (UNMC). I first, was on hemodialysis, a form of dialysis that is usually performed with a catheter placed in the chest used as an access to cycle large amounts of blood into a machine that cleans the blood and returns it to the body. If you are on hemodialysis for a long-term period, a surgeon will create a port in your arm or leg called a fistula. However, I was only on this form of dialysis for nine month, until I switched to peritoneal dialysis.
I started peritoneal dialysis in March of 2012, because I was denied a kidney transplant at UNMC. Peritoneal dialysis is performed using a catheter placed in your abdomen that cycles a dextrose fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzer that cleans your blood. I was on peritoneal dialysis until May of 2013, when I received the kidney.
Today, I am living with a new kidney and doing wonderfully in aspects of my renal (kidney) health. The transplant team at the UIHC was impressed with how well my body accepted the kidney and recovered from surgery. My creatinine level, which determines how well the kidney is doing, is 0.9. This number is awesome. You do not always see transplant patients do that well after transplant. My incisions are completely healed. I am down to only having blood draws once a month and only needing to visit UIHC once a year.
In 2010, my senior year in High School, I turned 19 and lost my health insurance. This happened because in Nebraska, you are an adult at age 19 and you must re-apply for Medicaid. I did just that and was denied. I was told that I was not eligible for coverage for having a pre-existing condition. I tried applying four times with the same results each time. However, I was still in High School, therefore I stopped trying and instead focused on graduating High School. I went most of that year without any of my medications. It is a fact that because of this, it cut a couple of years off my life and made me go into renal failure more quickly. I went from needing a kidney transplant in 3 – 5 years to needing one in six months to a year. If I would have had health insurance, coverage I would have been able to wait until after college to get a kidney transplant.
Since I graduated from High School, I have wished to contribute to society in any way possible and work to create the change I seek. However, because of having Cystinosis and going on dialysis forced me to stop working. To stay busy I volunteered on issue and political campaigns such as fighting for Full LGBT Equality, voting rights, and health care for all. I am passionate about these because I look forward to a future where everyone has the right to vote, has full and equal human rights, and access to high quality health care. For me, these causes are important because I know first-hand how not having access to health care can cause chronic diseases to get worse like my disease did.
I am currently not employed because even though my kidney issue is resolved for the moment. I still have Cystinosis. Remember it affects my entire body. Because of Cystinosis, I have Fanconi Syndrome, where molecules that should be reabsorbed into the blood stream are instead eliminated in the urine. This leads to the loss of important minerals, salts, fluids, and many nutrients. I also have issues with my eyes being extremely sensitive to sunlight and light in general. I have some issues with my heart and starting to have some neurological issues and frequent headaches. This all leads to a lot of stress and feeling sick. Not to forget, during my time on dialysis, I gained a lot of weight, which in of itself is causing problems.
I am participating in long-term clinical research study at the National Institutes of Health (NIH) in Bethesda, Maryland. I see Dr. William Gahl, one of the leading researchers in the world on Cystinosis. Dr. Gahl’s study was one of the first studies of its kind on Cystinosis. I currently see him for specialized study of the progression of Cystinosis in my body and to aid his research into the long-term effects of the disease. I first saw Dr. Gahl in 1992 shortly after I was diagnosed with Cystinosis. Since then I have participated in several studies elsewhere including at the University of California at San Diego Medical Center (UCSDMC) where they studied the psychological and neurological effects of Cystinosis.
There has been a lot of progress in treatment and management of Cystinosis. For instance, I take Procysbi instead of Cystagon. When I took Cystagon, I had to take 13 capsules four times a day and the medication made me sick. With Procysbi, I only take five capsules two times a day with nearly no side effects. There has also been progress made in studies using stem cells, which could cure Cystinosis. Therefore, there really is hope.
I am raising funds to help find that cure for my terrible disease. I hope you all will join me in this effort. Finding a cure not only will save my life but will save my little sister’s life and many more. Can I count on you all to join me?
*Funds will go directly to the Cystinosis Research Foundation (501(c)3 non-profit) that has no paid staff and sending all funds to cystinosis research.