Jim Myers: Why I’m a Pediatric Kidney Patient Advocate
From April 2018, AAKP Pediatric Kidney Pals e-newsletter article
You don’t have to be a parent of a child who has kidney disease or have been someone with pediatric kidney disease to be an advocate for this population. AAKP Board of Director's member, Ambassador for the state of Indiana and contributing editor of AAKP's Pediatric Kidney Pals e-newsletter, Jim Myers, has a heart for kidney kids. He was diagnosed with kidney disease in 1983, he was 25 years old. Jim was told at the time that he was young to have that diagnosis. Now, having lived with kidney disease for more than 35 years, he advocates for those suffering from this condition, and he especially advocates for kids.
Jim recalls seeing a video a few years back that kicked it off for him. It was a video of a mother of a small child with kidney disease, holding the child in a sink of cold water to cool off on a hot day. The child looked about 4 or 5 years old but he was really quite older. The child was very upset, he was crying, his face was red, and he had his little fists balled up. Jim recalls that when he saw that video he wondered what was wrong. Why was the child so upset? Then, he realized. The child was thirsty. He was on fluid restriction. He wanted a drink of water, not to sit in cold water! The child probably did not understand why everyone else could drink water and not him. Jim, then wondered, how do parents of kidney kids do it? How do you explain things like fluid restriction to kids? How do you explain all the other lifestyle modifications that come along with having kidney disease? How do you explain to them that everything being done, although difficult at times, is going to help them? His heart went out to kids who had to deal with these “grown-up issues”.
This is just one reason why, as an AAKP Board Member, Jim is leading AAKP’s Caring for Kidney Kids Initiative. AAKP has developed this initiative to unite this community of parents, families, kids and adolescents to help them:
- Better understand chronic kidney disease
- Be informed of all the available treatment options for their child
- Have access to tools on how to manage issues that may come with kidney disease such as dietary modifications and fluid restrictions
- Have access to supportive resources that show how kidney disease can impact the family dynamic and ways to cope
- Have access to educational material designed specifically for this young population that will inform, inspire and help them understand what is going on in their body and the transition into adulthood – helping them to live a fulfilling life and achieve their aspirations regardless of what they may face.
From Jim and the entire AAKP team, please enjoy this first issue of AAKP’s Pediatric Kidney Pals!