Hope Through Research

FundaCureI live with cystinosis. Cystinosis is a very rare genetic disease that causes cells to crystallize causing early cell death. It slowly destroys the organs in my body including the kidneys, liver, eyes, muscles, and brain. As I age, the disease affects my body further, inflicting damage to multiple organ systems. I take many medications to slow the progression of the disease but there is no cure.

I am working to change this!

This August I am doing a grassroots fundraiser at the Urban Abbey for cystinosis research to fund a cure. The money raised will go directly to the Cystinosis Research Foundation (CRF) the largest non-profit 501(c)3 fund provider of cystinosis research in the world. To date, the CRF has funded and committed more than $18 million to cystinosis research and has awarded 114 research studies and fellowships in 11 countries. The CRF research funded at the University of California, San Diego (UCSD) has resulted in the development of a slow-release form of cysteamine the medication used to slow the progression of cystinosis. On April 30, 2013, the FDA approved the new drug Procysbi.

Go here to RSVP for the event: Cure Cystinosis Grassroots Fundraiser

At the fundraiser, there will be several ways to donate, by check or online at www.gofundme.com/FundHOPEthroughresearch

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*100% of the funds raised will support cystinosis research. All donations are tax deductible. CRF Federal Tax ID # 32-0067668*

Let me tell you a little about my story of living with cystinosis. I am 23 years old. I was born with cystinosis and diagnosed around age 10 months. I have already had kidney failure and this disease has been a struggle for me and my friends and family. It has caused a lot of trauma. I cannot even comprehend how difficult it was for my family to get the news of my diagnosis and how it will eventually take my life if we do not find a cure.

I began dialysis in May of 2011, when my kidney failure reached a point that I could not live without it and I was a patient at the University of Nebraska Medical Center (UNMC). When I first started dialysis, I was on hemodialysis. Fortunately, I was only on this form of dialysis for about 9 months when I learned about peritoneal dialysis and switched to it.

Today, I am living with a new kidney and doing wonderfully in aspects of my renal (kidney) health. I received a living donor kidney transplant and had the transplant surgery done at the University of Iowa Hospitals and Clinics (UIHC). The transplant team at UIHC have been impressed with how well I am doing and how my body accepted the kidney and recovered from surgery. Even my blood levels are great! My creatinine level, which determines how well the kidney is doing, is 0.8.! This number is awesome! I am now down to only having blood draws to check my levels once every other month and I don’t need to see the transplant team until June of 2015.

As the years go by and I celebrate my birthday, it is becoming a bit difficult because living with cystinosis I need to have more honest and open discussions about what adult life with cystinosis entails. Yes, I got the kidney that is sustaining my life; it is giving me more years. Nevertheless, my health is slowly deteriorating, I have pain in my eyes, my muscles are weakening and I do have a lot of fatigue, it is my companion and I must recognize and work with it. As I age, I take on more responsibility with my health and advocating for myself. It is a lot.

“What sustains the cystinosis community from the harsh realities and daily life with cystinosis is the hope and promise of better treatments and a cure for cystinosis. It is all about research.” – Nancy Stack Chair and Founder of the Cystinosis Research Network and Parent of a cystinosis patient.

Now let me share with Tina’s story:

Donate here: Hope through Research

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Help Fund a Cure for Mika’s Disease

599457_111877858954314_119659440_nMy 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.

Post-Op Kidney Transplant
Post-Op Kidney Transplant

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.

IV meds post-op transplant. Not many compared to most transplant patients.
IV meds post-op transplant. Not many compared to most transplant patients.

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.

Me in Pre-op with Diane and family
Me in Pre-op with Diane and family

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.

Healthcare event in Council Bluffs, Iowa.
Healthcare event in Council Bluffs, Iowa.

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.

International Day Against Homophobia and Transphobia Rally
International Day Against Homophobia and Transphobia Rally

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.

National Institutes of Health (NIH)
National Institutes of Health (NIH)

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?

You can donate by visiting www.gofundme.com/9ibcmo or click here: Fund a Cure

*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. 

Why Obamacare is important to me

1479020_10201819868972906_734981903_nMy name is Mika Covington and I am a first generation Iowan. I grew up in a small town in Nebraska in a middle class family with three siblings. Life was difficult for my family because I was born with a rare disease called Cystinosis. Cystinosis is a rare metabolic disease that causes early cell death and it slowly destroys my organs including my kidneys, liver, and eyes. There is no cure for Cystinosis, however there is some amazing research being done at the National Institutes of Health (NIH) and at the University of California at Los Angeles (UCLA) with stem cells. Because of having this disease my parents always were worried about how to pay for my medical care and still pay for all the other bills. It was always a struggle for them.

I am now 22 years old and live in Council Bluffs, Iowa where I am working on getting some college classes done at Iowa Western Community College while recovering from a kidney transplant that I had last year at the University of Iowa Hospitals and Clinics (UIHC). Because of my disease and having the kidney transplant, I cannot work and so I am on disability. Luckily, because of the Affordable Care Act (Obamacare), my insurance cannot put a lifetime cap on my coverage and when I am able to work, again I cannot be denied coverage because of having a pre-existing condition.

Image from google
Image from google
Image from google
Image from google

This spring I volunteered to be an organizing fellow with Organizing for Action because I believe that healthcare is a human right and I want to be sure that as many people as possible can get covered through the ACA. I believe it is important to make sure Iowans are educated about what the ACA is and how it is already benefiting them. Unfortunately, many Congressional Republicans want to repeal and defund the ACA. They refuse to help kids and young adults like me to get the lifesaving healthcare services because their plan is to let insurance companies put lifetime caps on insurance and deny people like me coverage because of having a pre-existing condition.

As an organizer with OFA my goal is to make sure that doesn’t happen and make sure everyone understands what the ACA is and how they can get covered through it. I want to stand up for those who cannot speak for themselves and to stand up for the least of these.

Obamacare (Affordable Care Act) is working

tumblr_m6cqwlbVTa1qzhkvho1_500Obamacare is working, except the Republicans and Republican control media don’t want you to know that. Media outlets such as Fox continue to censor all positive stories about how Obamacare is working and helping millions of Americans.

#getcoverdNearly 365,000 people in the country has already bought private health insurance plans through the Marketplace and more than 800,000 people are able to finally get health insurance through the Medicaid expansion in the states. And thousands of Americans are signing up for healthcare insurance everyday. (WhiteHouse)

Because of the healthcare law, up to 105 million Americans can’t be subject to lifetime caps. And up to 17 million children with pre-existing conditions can’t be denied coverage or charged more. Specifically, in Iowa the healthcare law has allowed over 800,000 Iowans to receive at least one preventive service at no out of pocket cost. (WhiteHouse)

In addition, the healthcare law adds protections for the LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, and asexual) community by prohibiting insurance companies from denying LGBTQIA people coverage. The healthcare.gov website has even been designed to help consumers find the health insurances that cover domestic partners. Obamacare also provides access to evidence-based interventions addressing tobacco control, obesity prevention, HIV-related health disparities, better nutrition and physical activity.

As I continue to report, I have Cystinosis and because of living with this terminal illness I visit lots of doctors and hospitals. Thus, I rack up tons of medical bills. I also recently, had a living donor kidney transplant at the University of Iowa Hospitals and Clinics. However, thanks to the Affordable Care Act (Obamacare) insurance companies cannot deny me coverage because of my pre-existing illness and they cannot deny me coverage because of a lifetime cap. In addition, because of the healthcare law my premiums and co-pays are lower and preventive services such as flu shots were free of charge.

#getcoverd2Obamacare is working and is saving lives. The Republicans and conservatives don’t want you to know this because they don’t want to admit that they are wrong and their plans will only hurt the American people but vastly benefit corporations and their CEOs.

I recommend that if you don’t have health insurance or you do but the plan is too costly, then go to the health insurance Marketplace at www.HealthCare.gov and sign up. If you qualify for subsidies or Medicaid it will help you get those.

Mika’s Cystinosis

SAMSUNGAt age ten months, I became very ill and was rushed into the emergency room (ER). The doctors diagnosed me with dehydration and failure to thrive. In the following months, I went through many tests including bone marrow taken from my hip. The doctors concluded from these tests that I had Nephropathic Cystinosis. This was a very scary moment for my family, they had no idea what Cystinosis was.

Dr. Gahl at NIH
Dr. Gahl at NIH

I owe my life to Dr. William Gahl from the National Institutes of Health (NIH). I began seeing him in 1992. Dr. Gahl shortly before meeting me he 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 and those medication that I am still living. The first group of doctors, I saw at the University of Nebraska Medical Center were useless, they told my parents that they did not believe I would live to be six years old because they didn’t wish to go out of their way to really figure out what was wrong with me. Nevertheless, they were right, if I would not have started the Cystagon I would have died.

Cystinosis has become part of my life. Cystinosis had done many great things for me. I look at Cystinosis as some sort of tool. I have been able to educate myself on many things that most people do not understand because of this illness. I understand most if not all of what many of my medications do and how they work. I understand what Cystinosis does and what Cystinosis is; I know the many different functions of the body especially the kidneys and what levels should be. I am able to travel to many different places. For instance, I go to the NIH once every other year, which is located in Bethesda, Maryland just outside of Washington, D.C. It has given me the opportunity to travel to California where I took part in a psychology study in San Diego. Cystinosis has also made me become more mature then many people my age and thus, I look at the world much differently.

250px-NIH_Clinical_Research_Center_aerialNonetheless, there are many negative aspects of living with Cystinosis, such as I have been to so many hospitals that I have lost count of them. The hands of so many medical professionals have touched me, which has led to me trying to tell them what to do, when they draw blood and start IVs. I have had so many different scans and X-rays that now, I have been exposed to more radiation then an average Iowan. I also take many different medication, which have many different side effects. Some of those side effects including vomiting, diarrhea, headaches, and bad breathe. Thus, the medications are another negative aspect of Cystinosis. But, I guess the most negative aspect of living with Cystinosis is that it will eventually kill me. 

Today, living with Cystinosis is much easier because I finally after 3 years of waiting and the first transplant center refusing to do the transplant after scheduling it twice in the same year, I got my kidney transplant. I am doing much better and continue to improve. I owe that to the University of  Iowa Hospitals and Clinics and Dr. Reed who did my kidney transplant. Oh and I guess Jon the donor. But, he didn’t have a huge roll in it, he only had to lay on a table and give up his kidney. Thanks Jon!

The following are graphs of my blood levels post kidney transplant. 

Creatininelevels

Potassiumlevels

Hemoglobinlevels

BUNlevels

WBClevels

PlateletCountlevels