2014 Election: Democrats forget their Principles

Post-Election: Progressive Values Needed

 

Image by the Times.

Image by the Times.

This past election in November did not go the way many progressive Democrats would have liked.  I know I am one of many who were deeply disappointed in the results along with the voter turnout. Specifically in Iowa, nearly all of our candidates lost.

The Iowa House stayed in the control of the Republicans and the Iowa Senate fortunately took another seat and is Democratic plus one. Federally, the House will have nearly a super majority of Republicans (250) and the Senate will be in the control of the Republicans (55).

20141108_gdm333_10Thus, it is very difficult as a progressive Democratic, and especially to be positive about this last election.

However, if you look at the states you might see a different story. For instance, in the two states where ‘Personhood’ amendments were on the ballot they were rejected. They were not simply rejected, but by wide margins. The amendments were on the ballots in Colorado and North Dakota. Colorado voters rejected ‘Personhood’ by about 64% to 36% and North Dakota by 64.1% to 35.9%. In Colorado this was the third time voters took the issue up and rejected it. It lost in 2008 and 2010.

In addition, progressive policies such as raising the minimum wage, paid sick days, and paid family and medical leave were approved by the voters in the states. In all five (Alaska, Arkansa, Nebraska, Illinois, South Dakota, and the District of Columbia (D.C.))  states and D.C. that had the minimum wage on the ballot, it passed. In Massachusetts, Oakland, California, and Montclair and Trenton, New Jersey voters approved paid sick days.

It is my belief that with these results and the results of polls such as the poll by the National Partnership for Women & Families and the Rockefeller Family Fund that one of the major faults in the 2014 campaigns is the lack of positions and debate of policies that promote economic security for families. To be specific, I mean paid sick days, paid family and medical leave, fair pay, such as the Paycheck Fairness Act, and the Pregnant Workers Fairness Act.

Maternity-leave-chartThe poll found that 81% of voters said it is important for lawmakers to consider new laws that help keep working families economically secure. With 57% indicating that it is “very important” that they do so. Additional key findings indicate that there are strong support for family friendly policies across party and demographic lines. Such as 96% of Democrats, 73% of Republicans, 87% of women, 75% of men, 95% of voters under 30, 97% of African Americans, and 95% of Latinos. In addition, of all candidates running for Governor, U.S. Senate, and U.S. House only 23% featured their positions on these policies.

It is my opinion that a part of the reason so many of the Democrats lost is because the campaigns seemed to be focused around what we are not but forgetting to run on what we are for. I felt that many Democrats did not have a backbone when it came to Democratic Party principles. It seemed as though many candidates were running campaigns saying,

“Hey, I’m a Democrat, vote for me because I’m a Democrat.”

I also felt campaigns telling people to just fall in line and vote for a party instead of the candidate. That is not something voters under 30 like to hear and will turn them off. I felt that the way some of these so-called coordinated campaigns were run didn’t do a good job at relating to the people in their community and acknowledging them, which in turn may have led to the lack of youth and minority interest.

Most importantly, I believe the problem was not having strong progressive platforms on women’s and family issues and standing strong for those positions, defending them, and making them public.

international-maternity-leave-timeline-2013Many of these issues have have broad support and are winnable. Not to forget how vital they are to the working class and families to ensure their economic security. This area is one that the Democratic Party can and must improve on. These policies have even been instituted by nearly every industrialized nation in the world except the U.S. (NYTimes) Not to mention, how ensuring our candidates include them and support them proudly could motivate young adults to be more interested in our candidates. For they could feel and see them fighting for their needs as many of them would currently apply.

My Life from there to Here

This question was asked in my Development Psychology class and hit me more than I thought it would.

Are there any issues you had with your parents, your school work, your friends, or your romantic involvements in the last year of high school that continued to be issues for you in college? Reflect on your own personality, interests and cognitive abilities at the time you graduated high school. How did these personality characteristics and abilities manifest themselves in subsequent years? How have they changed since your high school days, if at all?

I felt like, “wow how in the world do I answer that with the journey I have been through thus far.” I felt like it was almost impossible for me to explain it all in words. But this was my answer.

There was so much that happened back then in that year and the following year that I would need to write a book to describe it all. That last year in high school, I turned 19 years old and lost my health insurance (Nebraska Medicaid) while still living with with cystinosis (a fatal genetic disease). After I reapplied, Medicaid claimed that they would not cover me because of my pre-existing condition. The condition I have had my entire life, the condition I had when I was first added to Medicaid.

Thus, while attempting to be a high school student and complete my senior year, I needed to figure out how in the world I was going to get health insurance. I needed the insurance to cover all of my medications that kept me alive and keeps the disease at bay. I appealed Nebraska Medicaid four times and lost each time. Therefore, I stopped and decided to focus on graduating and hopefully moving on to college.

At this point, I was working at J.C. Penny but not nearly making enough money to cover for private health insurance. Not to forget, I was beginning my process of coming out as transgender and finding my political affiliation as a socialist Democrat. This caused several other issues or benefits. I guess it depends on how you look at it. I had to fight for myself constantly at school, at work, at the hospital, and at the Health and Human Services office. It was never ending or it seems like it is never ending. While many of my friends where talking and laughing about who they were dating, talking about what college they planned to attend, and what classes they would take.

Nope not me, they actually made me feel angry, hurt, and mad at the world. However, they also made me understand the “real world” much more clearly. I guess they all may have made me stronger. I am now different, yet the same. Those experiences and trials made me stronger, they made me into the person I am today, although I believe they damaged me. They caused me to make sacrifices that I did not want to make, but I knew I needed to, so that it would protect me and get things done. They made me into a cold person who must work hard at being sociable and warm. I am so different from four years ago when I graduated from Millard South High School in 2010.

Now, I would like to fill in the blanks between 2010 and now, with a little extra.

I was diagnosed with cystinosis around age 10 months old. Cystinosis is a rare orphan disease that causes the amino acid cystine to accumulate in the cells. As the cystine accumulates in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, muscles and brain. An orphan disease is a disease that has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. Almost 7,000 rare or “orphan” diseases in the United States collectively affect nearly 30 million people. In the case of cystinosis, only 2,000 in the world are affected.

Cystinosis has been a struggle. It has been a challenge for me and those who care about me. Yes, I maybe a so-called survivor; however I’m living with it every day. When I was a kid, I was always seen as different. Every day, I went to the nurse’s office to take medications. Many days I had bad breath and body odor from the Cystagon, and I felt sick to my stomach that usually ended in me vomiting. Elementary and middle school were especially difficult for me because of this. Not to forget all of the doctor appointments and hospitalizations I had to go to which caused me to miss a lot of school. Growing up with cystinosis is difficult and quite the journey.

Cystinosis has been difficult on my family, too. I cannot even comprehend how heartbreaking it must have been for them to get the news that cystinosis is an incurable disease. Then, to see me go through all of the hospital visits, side effects from the medications, and just daily life with cystinosis. However, I am proud because I am one of the only cystinosis patients to make it to 19 years old before needing a kidney transplant.

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 (cystinosis). I tried applying four times with the same results each time. With no avenue to appeal their decision, I decided to focus on graduating high school and going to college until my scheduled trip to the National Institutes of Health (NIH) that fall. I went most of that year without any of my medications. This resulted in me going into end stage renal or kidney failure and it probably cut a few years off my life. I went from needing a kidney transplant in 2-4 years to needing one in six months to 1 year. If I would have had health insurance, I might have been able to wait until after college to get a kidney transplant.

599457_111877858954314_119659440_nWhen I graduated from high school, I knew I wanted 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, it forced me to stop working. To stay busy, I volunteer 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 a chronic disease to get worse like my disease did.

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) or Nebraska Medical Center (now: Nebraska Medicine) being evaluated for kidney transplant. I first was on hemodialysis, a form of dialysis that is usually performed with a catheter placed in the chest that is used as an access to cycle large amounts of blood into a machine that cleans the blood and returns it to the body. Fortunately, I was only on this form of dialysis for nine long months, until I switched to peritoneal dialysis.

I started peritoneal dialysis in March of 2012, because I was denied getting a kidney transplant at the Nebraska Medical Center (UNMC) from my living donor and would need to be on dialysis much longer, in addition to hemodialysis not working out for me. I had many complications with hemodialysis and cystinosis. For example, cystinosis patients are not your typical kidney failure patients because we still need access to water and potassium. This is why our specialists recommend having the kidney transplant as soon as possible and never going on dialysis. Most health care professionals are not fully educated on cystinosis. Therefore, cystinosis patients like me must take it upon us to help educate our health care professionals.

Even with the additional education sometimes, mistakes are made. While I was on hemodialysis, it caused me to continuously become dehydrated, have hypotension (low blood pressure) and tachycardia (fast heart rate). In addition, I had other complications like the catheter itself falling out of my chest and a couple of times where there were infections. By the end of the period of me bing on hemodialysis, I had seven hemodialysis catheters placed in my upper right chest. I can show those afterwards.

Peritoneal dialysis is performed using a catheter placed in your abdomen that cycles a dextrose mixture fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzer that cleans your blood. Peritoneal dialysis was much better for me because I was able to better control how much fluid I take off my body and my health care was more in my own control. It also was done at home. This way I did not have to go to a dialysis center. It gave me more of my life back. I was on peritoneal dialysis until May 30, 2013, when I received the Gift of Life from my living donor. I had the kidney transplant at the wonderful University of Iowa Hospitals and Clinics (UIHC), in Iowa City. At UIHC, I received excellent care and compassionate treatment. I personally feel they are the best in the Midwest.

Today, I am living with a new kidney, which I named Serenity after the ship on FireFly a scifi show, and doing wonderfully in aspects of my kidney health. The transplant team at 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! I am now down to only having blood drawn once every other month to check my levels and only need to visit UIHC once a year.

Currently, I am 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 I constantly must fight the loss of water, important minerals, salts, and nutrients. I have issues with my eyes being extremely sensitive to sunlight and light in general. I also have some issues with my heart and frequent headaches. This all leads to a lot of stress and still feeling sick.

I must point out, I don’t only have cystinosis. I have nephropathic or infantile cystinosis. There are three forms of cystinosis: nephropathic (infantile), late-onset (intermediate), and ocular (adult). The most common and severe form is nephropathic cystinosis. Patients with nephropathic cystinosis appear normal at birth. However, before one year of age have excessive thirst and urination, and failure to thrive. They are smaller than others are their age and often tend to be in the lowest percentile or even off the pediatric growth chart. There may be delays with walking and bearing weight. With late-onset cystinosis, cystine crystals are present in the eyes but kidney function remains normal.

Fortunately, we have the drug cysteamine to slow the progression of cystinosis by removing the cystine from the cells. There are two forms of cysteamine Cystagon and Procysbi. The FDA approved Cystagon for the treatment of cystinosis in 1994. Cystagon must be taken every six hours, every day. I was on Cystagon during the trial and had been taking it for nearly 21 years of my life. It caused me to feel sick almost every day.

Last year, the FDA approved Procysbi, a delayed-release capsule for the treatment of only nephropathic cystinosis in adults and children 6 years and older. I was lucky enough and started Procysbi about eight months ago and I have nearly no side effects. There is only one medication to treat the corneal cystine crystal accumulation in patients with cystinosis, Cystaran. Cystaran must be used every hour while awake in order to remove the cystine crystals from the cornea. Patients who begin cysteamine treatment early enough, and are compliant in taking cysteamine as prescribed, generally delay the need for kidney transplantation for several years.

We must find a cure. Thus, I am participating in a long-term clinical research study at the National Institutes of Health (NIH) in Bethesda, Maryland. In the study, 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 the specialized study of the progression of the disease in my body and to aid his research in the long-term effects of the disease, which I hope will assist in finding a cure. I began seeing Dr. Gahl when I was a baby, shortly after I was diagnosed with cystinosis. I spent several weeks at a time there. Basically, I grew up there from 1992 to 1996.

In addition, I have participated in several other studies, including at the University of California at San Diego Medical Center, where they studied the neurological and psychological effects of cystinosis. I was also a participant in the study at the NIH, which proved to the FDA that the eye drops work to reduce the cystine crystals on the corneas.

Today, I am back in college working on my psychology degree, however it won’t matter if there is no cure for my terrible disease. There is an organization that is working on this issue, the Cystinosis Research Foundation (CRF). CRF is a non-profit 501(c)3 organization that was started by the amazing Stack family in 2003, after Natalie Stack their daughter, made a wish on the eve of her twelfth birthday,

to have my disease go away forever

CRF today supports bench and clinical research that is focused on developing improved treatments and a cure for cystinosis.

CRF has funded every bench and clinical research study that led to Procysbi, allowing cystinosis patients like me to take the drug every 12 hours instead of every 6 hours, which greatly improves our quality of life. They established the CRF Cystinosis Gene Therapy Consortium, whose mission is to bring stem cell therapy to clinical trial. The CRF is currently funding investigator in eleven countries. Some of the areas of focus include stem cell and gene therapy, effects of cystinosis on neurological function and cognitive development, causes of muscle-wasting and potential therapies, etc.

Finding a cure may save my life, as well as others with cystinosis including my sister Mary, or even persons with other diseases. Knowledge discovered by studying one “orphan” disease often leads to advancements in other diseases.

one-fist

Here (2014):

I am working on my Associates Degree at Iowa Western Community College in Psychology. I was in college in 2010-2011. However, I had to leave because of my health and being on dialysis. This fall semester of 2014 was me getting back into the hang of it. Next semester I will be taking a full load of classes or at least what I consider a full load four classes three of them are 3 hour credits and one is 4 hour credits.

Moving forward from the elections I plan to work on issues and help the Democratic party the best I can. I plan to work on issues on topics of feminism, workers’ rights, and full and equal human rights.

Videos:

These are videos on topics that I will be working on in 2015 and I will be writing about. Check them out!

Battle For The Net

If you woke up tomorrow, and your internet looked like this, what would you do?

Imagine all your favorite websites taking forever to load, while you get annoying notifications from your ISP suggesting you switch to one of their approved “Fast Lane” sites. Think about what we would lose: all the weird, alternative, interesting, and enlightening stuff that makes the Internet so much cooler than mainstream Cable TV. What if the only news sites you could reliably connect to were the ones that had deals with companies like Comcast and Verizon? On September 10th, just a few days before the FCC’s comment deadline, public interest organizations are issuing an open, international call for websites and internet users to unite for an “Internet Slowdown” to show the world what the web would be like if Team Cable gets their way and trashes net neutrality. Net neutrality is hard to explain, so our hope is that this action will help SHOW the world what’s really at stake if we lose the open Internet.If you’ve got a website, blog or tumblr, get the code to join the #InternetSlowdown here: https://battleforthenet.com/sept10thEveryone else, here’s a quick list of things you can do to help spread the word about the slowdown: http://tumblr.fightforthefuture.org/post/96020972118/be-a-part-of-the-great-internet-slowdown Get creative! Don’t let us tell you what to do. See you on the net September 10th!

via Battle For The Net.

Call on Congress to take the 2014 Equality Poll

marriage_equaltiy_3_0

Image credits: Photo from google.com

Progressive friends and family, it is clear that the lesbian, gay, bisexual, and transgender (LGBT) movement’s next move is to lobby Congress for a comprehensive LGBT civil rights bill.

That time is here. 

The Equality Pledge Network has begun conducting the 2014 Equality Poll. The poll is seeking our elected official’s position regarding comprehensive LGBT civil rights and full federal equality in the United States.

The Equality Pledge Network is a nationwide alliance for full LGBT equality. The Equality Pledge Network’s support spans the entire LGBT community including LGBT statewide organizations, pride committees, LGBT community centers, GLSEN and PFLAG chapters, Stonewall Democrats, and the grassroots.

The 2014 Equality Poll corresponds with the Pledge for Full LGBT Equality, endorsed by over 250 LGBT and allied organizations listed here, which calls upon Congress to categorically outlaw discrimination against LGBT Americans as a human rights imperative and a public health emergency.

The poll has been sent out to nearly every member of Congress. Now is the time to follow up with members of Congress and urge them to take the poll.

Therefore, I am asking you today, to call, email, or fax your member of Congress, ask them to take the poll and share your personal story.

The following is a sample message that you can use:

Dear Honorable United States Representative/Senator [Name],

My name is [your name] and I am your consituent. I am writing you to encourage you to take the 2014 Equality Poll. The poll is seeking your position regarding comprehensive lesbian, gay, bisexual, and transgender (LGBT) civil rights and full federal equality in the United States.

(Add your personal story)

I call upon your sense of justice and compassion in asking for your support to protect LGBT Americans from discrimination equally and fully.

Sincerely,
[your name]

You can find the 2014 Equality Poll here and you can go here to find your Congressperson. This website here makes it easy for you to fax your Congressperson.

Thank you so much for your time and energy in this effort for fairness and equality for all.

Sincerely,
Mika Covington

Vote 2014 for Your Families & YOUR Future!

Do you want to wake up on November 5th, and have this for our Congress? 

and this 

Or do you want a Congress that works and works for the people, for you, and for your family?

Then join me and commit to vote this November 4th! Vote for candidates that will fight to protect the middle class, civil rights, Medicare and Social Security.

Go here to commit to vote in 2014: http://www.1millionvotesfor2014.com/

Please join me in voting for candidates that believe in true progressive values. Join me in supporting candidates such as Congressman Bruce Braley for U.S. Senate, Staci Appel for Congress in Iowa’s 3rd, State Senator Jack Hatch for Iowa Governor, and Brad Anderson for Secretary of State of Iowa. These are just some of the great candidates that we can vote in to make a change!

Congressman Bruce Braley for U.S. Senate

Bruce has represented Iowa in the U.S. House since 2007, where he worked to promote policies that strengthen and expand the middle class and help create the environment for job creation. He wrote a tax cut for businesses that hire unemployed workers; helping an estimated, 100,000 Iowans get back to work. He worked to create a job-training program for Iowans who wanted to get a new job in the field of renewable energy.

  • Bruce supports raising the federal minimum wage to $10.10 per hour and tying it to the rate of inflation.
  • Bruce is a cosponsor of the Paycheck Fairness Act, which will strengthen protections against wage discrimination.
  • While in Congress, he voted to ban the National Security Agency (NSA) from collecting records under the PATRIOT Act.

Learn more about Bruce and my thoughts on him here: Bruce Braley

Staci Appel for U.S. House

Staci has fought for the middle class in the Iowa State Senate. She had a steadfast commitment to the people of Iowa and Senate Majority Leader Mike Gronstal (my current State Senator) took notice, “I have never seen a freshman legislator come to the capitol and work as hard as Staci Appel.” Staci worked on legislation that included Iowa’s statewide smoking ban, preschool for every 4 year old and she even championed the bill making Iowa the first state in the nation to require equal pay for equal work.

  • Staci even has the endorsements of EMILY’s List, Women’s Campaign Fund, and the Planned Parenthood Action Fund.

Learn more about Staci and my thoughts on her here: Staci Appel

State Senator Jack Hatch for Iowa Governor

Jack has been a leading progressive voice in Iowa, from health care reform to environmental protection and has written some of the most significant legislation of the past three decades in Iowa.

  • Jack wrote Iowa’s first and toughest environmental protection legislation (underground storage tank cleanup).
  • Leading statewide health care reform
  • Fighting to expand access to Medicaid

Learn more about Jack and my thoughts on him here: Jack Hatch

Brad Anderson for Iowa Secretary of State

“Iowa has a proud reputation for civic participation, but there is always room to improve when it comes to voter turnout. I believe the time has come for Iowa to take the reins as number one in the nation in voter turnout, and I have a plan to get us there within the next decade.” – Brad Anderson

Brad has a plan for the office to change the office. He plans to actually do the job.

Here is his plan to make Iowa number one in voter turnout:

  • Simplify the Vote by Mail Process
  • Online Voter Registration
  • Create and Promote an Election Info Hub
  • Reduce Number of Elections
  • Do No Harm

“New Businesses created in Iowa will help us grow our economy and bring jobs to our state, so it is incredibly important that we have a business filing system that is welcoming, affordable and efficient. My goal is simple – a new business should be able to log into the Secretary of State’s website and easily file their paperwork and pay the filing fee in under ten minutes.” – Brad Anderson

Learn more about Brad and my thoughts on him here: Brad Anderson

I believe it is vital for progressives to take back the U.S. House from the radical Republican Party (TEA Party) and to keep control of the U.S. Senate. I believe that if we don’t our nation will head down a dangerous path where corporations and special interest will be able to continue to buy America and control our elected officials.

 

Thank you! Still time to Give HOPE through Research!

FundaCureHuge thank you to everyone who have already donated to the Cystinosis Research Foundation to help Give HOPE through Research!

It means so much to me! I realize that it was during a weekday and that not everyone who wanted to attend was able. Therefore, there is still time to donate! Go here to: DONATE

If you also were interested in hearing other cystinosis patient’s stories please watch the youtube video below of Tina’s story.

If you were quite interested in what I was going to say in my little speech you can check that out right bellow!

599457_111877858954314_119659440_nMy name is Mika Covington; I’m 23 years old and hope to live 23 years more. I was diagnosed with cystinosis around age 10 months old. Cystinosis is a rare “orphan” disease that causes that amino acid cystine to accumulate in the cells. As the cystine accumulates in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, muscles and brain. An orphan disease is a disease that has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. Almost 7,000 rare or “orphan” diseases in the United States collectively affect nearly 30 million people. In the case of cystinosis, only 2,000 in the world are affected.

Cystinosis has been a struggle. It has been a challenge for me and those who are about me. Yes, I maybe a so-called survivor; however I’m living with it every day. When I was a kid, I was always seen as different. Every day, I went to the nurse’s office to take medications. Many days, I had bad breath and body order from the Cystagon, and I felt sick to my stomach that usually ended in me vomiting. Elementary and middle school were especially difficult for me because of this. Not to forget all of the doctor appointments and hospitalizations I had to go to which caused me to frequently miss school. Growing up with cystinosis is difficult and quite the journey.

Cystinosis has been difficult on my family, too. I cannot even comprehend how heartbreaking it must have been for them to get the news that cystinosis is an incurable disease. Then, to see me go through all of the hospital visits, side effects from the medications, and just daily life with cystinosis. However, I am proud because I am one of the only cystinosis patients to make it to 19 years old before needing a kidney transplant.

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 I was denied. I was told that I was not eligible for coverage for having a pre-existing condition (the cystinosis). I tried applying four times with the same results each time. With no avenue to appeal their decision, I decided to focus on graduating high school and going to college until my scheduled trip to the National Institutes of Health that fall. I went most of that year without any of my medications. this resulted in me going into end stage renal or kidney failure and it probably cut a few years off my life. I went from needing a kidney transplant in 2-4 years to needing one in six months to one year. If I would have had health insurance, I might have been able to wait until after college to get a kidney transplant.

International Day Against Homophobia and Transphobia Rally

International Day Against Homophobia and Transphobia Rally

When I graduated from high school, I knew I wanted 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, it forced me to stop working. To stay busy, I volunteer 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 a chronic disease to get worse like my disease did.

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) being evaluated for kidney transplant. I first was on hemodialysis, a form of dialysis that is performed with a catheter placed in the chest that is used as an access to cycle large amounts of blood into a machine that cleans the blood and returns it to the body. Fortunately, I was only on this form of dialysis for nine months, until I switched to peritoneal dialysis.

I started peritoneal dialysis in March of 2012, because I was denied getting a kidney transplant at UNMC from my living donor and would need to be on dialysis much longer, in addition to hemodialysis not working out for me. I had many complications with hemodialysis and cystinosis. For example, cystinosis patients are not your typical kidney failure patients because we still need access to water and potassium. This is why our specialists recommend having the kidney transplant as soon as possible. Most health care professionals are not fully educated on cystinosis. Therefore, cystinosis patients like me must take it upon us to help educate our health care professionals.

 554643_454772334563780_354924217_aEven with the additional education sometimes, mistakes are made. While I was on hemodialysis, it caused me to continuously become dehydrated, have hypotension (low blood pressure) and tachycardia (fast heart rate). In addition, I had other complications like the catheter itself falling out of my chest and a couple of times where there were infections. By the end of the period of me being on hemodialysis, I had seven hemodialysis catheters placed in my upper right chest. I can show those afterwards. 

Peritoneal dialysis is performed using a catheter placed in your abdomen that cycles a dextrose mixture fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzer that cleans your blood. Peritoneal dialysis was much better for me because I was able to better control how much fluid I take off my body and my health care was more in my own control. It also was done at home. This way I did not have to go to a dialysis center. It gave me more of my life back. I was on peritoneal dialysis until May 30, 2013, when I received the Gift of Life from my living donor. I had the kidney transplant at the wonderful University of Iowa Hospitals and Clinics (UIHC), in Iowa City. At UIHC, I received excellent care and compassionate treatment. I personally feel they are the best in the Midwest. 

Today, I am living with a new kidney, which I named Serenity after the ship on FireFly a scifi show, and doing wonderfully in aspects of my kidney health. The transplant team at 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 don’t always see transplant patients do this well at this point post-surgery! Even my incisions are healed so well you can hardly see them. I can show those to you afterwards too! I am now down to only having blood draws once every other month to check my levels and only need to visit UIHC once a year. 

Currently, I am 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 I constantly must fight the loss of water, important minerals, salts, and nutrients. I have issues with my eyes being extremely sensitive to sunlight and light in general. I also have some issues with my heart and frequent headaches. This all leads to a lot of stress and still feeling sick. 

I must point out, I don’t only have cystinosis. I have nephropathic or infantile cystinosis. There are three forms of cystinosis: nephropathic (infantile), late-onset (intermediate), and ocular (adult). The most common and severe form is nephropathic cystinosis. Patients with nephropathic cystinosis appear normal at birth. However, before one year of age have excessive thirst and urination, and failure to thrive. They are smaller than others are their age and often tend to be in the lowest percentile or even off the pediatric growth chart. There may be delays with walking and bearing weight. With late-onset cystinosis, kidney symptoms typically become apparent during adolescent years. With ocular cystinosis, cystine crystals are present in the eyes but kidney function remains normal. 

Fortunately, we have the drug cysteamine to slow the progression of cystinosis by removing the cystine from the cells. There are two forms of cysteamine Cystagon and Procysbi. The FDA approved Cystagon for the treatment of cystinosis in 1994. Cystagon must be taken every six hours, every day. I was on Cystagon during the trial and had been taking it for nearly 21 years of my life. It caused me to feel sick almost every day. 

Last year, the FDA approved Procysbi, a delayed-release capsule for the treatment of only nephropathic cystinosis in adults and children 6 years and older. I was lucky enough to start Procysbi about four months ago and I have nearly no side effects from the new form. There is only one medication to treat the corneal cystine crystal accumulation in patients with cystinosis, Cystaran. Cystaran must be used every hour while awake in order to remove the cystine crystals from the cornea. Patients who begin cysteamine treatment early enough, and are compliant in taking cysteamine as prescribed, generally delay the need for kidney transplantation for several years. 

250px-NIH_Clinical_Research_Center_aerialWe must find a cure. Thus, I am participating in a long-term clinical research study at the National Institutes of Health (NIH) in Bethesda, Maryland. In the study, 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 it’s kind on cystinosis. I currently see him for the specialized study of the progression of the disease in my body and to aid his research in the long-term effects of the disease, which I hope will assist in finding a cure. I began seeing Dr. Gahl when I was a baby, shortly after I was diagnosed with cystinosis. I spent several weeks at a time there. Basically, I grew up there from 1992 to 1996.

In addition, I have participated in several other studies, including at the University of California at San Diego Medical Center, where they studied the neurological and psychological effects of cystinosis. I was also a participant in the study at the NIH, which proved to the FDA that the eye drops work to reduce the cystine crystals on the corneas. 

Today, I am here raising funds to help find that cure for my terrible disease. The money raised here will go directly to the Cystinosis Research Foundation (CRF). CRF is a non-profit 501(c)3 organization that was started by the amazing Stack family in 2003, after Natalie Stack their daughter, made a wish on the eve of her twelfth birthday, “to have my disease go away forever.” CRF today supports bench and clinical research that is focused on developing improved treatments and a cure for cystinosis. 

CRF has funded every bench and clinical research study that lead to Procysbi, allowing cystinosis patients like me to take the drug every 12 hours instead of every 6 hours, which greatly improves our quality of life. They established the CRF Cystinosis Gene Therapy Consortium, whose mission is to bring stem cell therapy to clinical trial. The CRF is currently funding investigators in eleven countries. Some of the areas of focus include stem cell and gene therapy, effects of cystinosis on neurological function and cognitive development, causes of muscle-wasting and potential therapies, etc. 

Finding a cure may save my life, as well as others with cystinosis including my sister Mary, or even persons with other diseases. Knowledge discovered by studying one “orphan” disease often leads to advancements in other diseases. 

Can I count on you to join me?

Go here to donate online: Fund a Cure 4 Cystinosis 

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

FCFCpic

*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