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Living with a Chronic Condition

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Friday, April 26, 2013

Bringing a Message to the Hill

By NeShell Monroe

NeShell Monroe

NeShell Monroe is a patient-advocate with the American Kidney Fund. Last month, NeShell traveled to Capitol Hill for the second year in a row to speak with her members of Congress about kidney disease awareness and prevention. NeShell has been on dialysis for more than 30 years and is currently on peritoneal dialysis.

Finding out you have a chronic condition is life-changing. I will never forget when I received the news that my kidneys failed. I was only 10 years old and lying in a hospital bed when my doctors told me my kidneys were no longer functioning and I had to go on dialysis. Growing up, I spent countless hours in the hospital, doing my junior high school course work from my hospital bed. When I was 14, I had the best four months of my life when I received a kidney transplant. Unfortunately my body rejected the transplant and I was forced to go back on dialysis. Now at the age of 42, I’m still living with chronic kidney disease with daily dialysis treatments- nearly my whole lifetime spent hooked up to a machine.

Being on dialysis for decades has been difficult, but I have learned to never give up and to always keep fighting. I continued school through college and worked fulltime, which has given me a sense of normalcy and determination to not lose hope. I try to surround myself with positive people; my family, friends and church support me in my fight against kidney disease. And I’ve found a sense of purpose as an advocate for the American Kidney Fund, which allows me to share my story with others in order to raise awareness for this often-preventable disease.

My journey toward advocacy began years ago when I was a teenager. During my transition from a children’s treatment center to an adult treatment center I found it shocking to learn that I knew more about my treatments and medications than many of the adult patients and technicians. Since then, I’ve grown increasingly passionate about educating others about kidney disease awareness and prevention.

In March I was honored to travel  on behalf of the American Kidney Fund to Capitol Hill for the second year in a row to join other patient-advocates from around the country that had the same mission:  to advocate for important legislation that would affect the nation’s dialysis and kidney transplant patients. I met with the offices of Representatives Al Green (D-TX) and Sheila Jackson Lee (D-TX), and Senators John Coryn (R-TX) and Ted Cruz (R-TX) to share my struggles with kidney disease, highlight the negative effects Medicare cuts would have on patients with chronic illnesses, and to urge them to raise awareness among their constituents. The more people we can make aware of the risks, the more cases we can prevent.

Meeting with the offices of my Congressional leaders was a life changing experience. They listened to my story and asked questions about the challenges of kidney disease. I felt like they were very open to talking about our mission. Many of the staff members joined us later that afternoon for the American Kidney Fund’s Kidney Action Day and participated in a free screening for kidney disease.

I believe that education and prevention are the best ways we can fight this devastating chronic condition. I urge you to get tested for kidney disease and to visit the American Kidney Fund’s Pair Up Promise for tips in staying healthy. I also encourage you to find your voice and make a difference – spread awareness of chronic conditions in your community. Together, we can make a difference for everyone who is living with a chronic condition.

Posted by: WebMD Blogs at 10:36 am

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