Jim Myers Interview with NKF President Dr. Sylvia Rosas

Dr Sylvia Rosas is a highly respected physician, healer, and researcher. With over 21 years of experience, she works as a nephrologist and epidemiologist at the Joslin Diabetes Center in Boston, Massachusetts. She holds several notable positions, including Director of the Latino Kidney Clinic and Associate Professor of Medicine at Harvard Medical School, as well as a nephrologist at the Beth Israel Deaconess Medical Center. Dr Rosas will also soon be taking on the role of Incoming President of the National Kidney Foundation.

Her areas of expertise include diabetic nephropathy, cardiovascular disease, chronic kidney disease, minority health, epidemiology, and clinical trials. Born in Puerto Rico and raised in Bogota, Colombia, she received her medical degree from the University of Rosario School of Medicine. After completing her Internal Medicine training in Chicago, she earned a Master's in Clinical Epidemiology from the University of Pennsylvania and completed the Wharton Management Program. She is Board Certified in both Internal Medicine and Nephrology.

Dr Rosas' primary research focus is the epidemiology of metabolic and cardiovascular complications in patients with chronic kidney disease, particularly diabetic kidney disease. She has also studied health disparities in individuals with chronic kidney disease, particularly those of Hispanic/Latino background. She leads the NIDDK-funded APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO) and is the top doc for the Kidney Precision Medicine Program (KPMP) Chronic Kidney Disease recruitment site at Joslin Diabetes Center.

Dr Rosas has served in various leadership roles, including as Chair of the Minority Affairs Committee of the Organ Procurement and Transplant Network/United Network for Organ Sharing (UNOS) and as Secretary for Women in Nephrology. She has received numerous awards, including the National Kidney Foundation (NKF) of New England Physician of the Year in 2017 and the National Hispanic Medical Association Fellow of the Year Award. She is an active volunteer with the National Kidney Foundation, serving as a member of the Spring Clinical Meeting Planning Committee, a judge at the Young Investigator Forum, and a member of the Scientific Advisory Board. She also serves on the medical board of the NKF NE chapter.

Dr Rosas is a member of the Editorial Board of the Clinical Journal of the American Society of Nephrology and the Advances of Chronic Kidney Disease Journal. She is an outstanding figure in her field and a deserving recipient of the Incoming President of the National Kidney Foundation title.

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Video Interview

Jim's interview with Dr. Sylvia Rosas can be viewed here.

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Podcast

The interview can also be listened to in this podcast.

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About Dr. Sylvia Rosas

She grew up in Puerto Rico and as a teenager moved to Bogota, Colombia where she graduated from the University of Rosario School of Medicine. Dr. Rosas then completed her Internal Medicine training at Michael Reese Hospital/University of Illinois at Chicago. She obtained Clinical Nephrology training and a Master’s in Clinical Epidemiology from the University of Pennsylvania. She also completed the Wharton Management Program.

Dr. Rosas’s primary research focus is on the epidemiology of metabolic and cardiovascular disease complications in patients with chronic kidney disease particularly diabetic kidney disease. She has also evaluated health disparities in individuals with CKD particularly in those of Hispanic/Latino background. She is the clinical center PI in the NIDDK-funded multicenter APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO) that evaluates the role of the APOL1 gene in kidney transplant outcomes. She is also the PI for the Kidney Precision Medicine Program (KPMP) Chronic Kidney Disease recruitment site at Joslin Diabetes Center. KPMP aims to ethically obtain and evaluate human kidney biopsies in order to create a kidney tissue atlas, define disease subgroups, and identify critical cells, pathways, and targets for novel therapies. She has received numerous awards including the National Kidney Foundation (NKF) of New England Physician of the Year in 2017 and National Hispanic Medical Association Fellow of the Year Award. She has been a longtime volunteer with the NKF including been a member of the Spring Clinical meeting planning committee, a judge at the Young Investigator Forum and a member of the Scientific Advisory Board at the National Kidney Foundation. On a local level, she has been a member of the medical board of the NKF NE chapter. She is a member of the Editorial Board of the Clinical Journal of the American Society of Nephrology and the Advances of Chronic Kidney Disease Journal. Dr. Rosas served as the Chair of the Minority Affairs Committee of the Organ Procurement and Transplant Network/United Network for Organ Sharing (UNOS). Dr. Rosas has been the secretary for Women in Nephrology as well as Program Committee Chair for the NIDDK Network for Minority Health Research Investigators.

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‍About Jim Myers

My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond, Ind. My mother and father ran a couple of grocery stores in my hometown, Cedar Lake, Ind. My dad was afflicted with polycystic kidney disease. On his side of the family, four other people died from PKD. I’ve lost five members of my family to PKD.

I was diagnosed with PKD when I was 25 years old. I went into my local hospital with what I thought were chest pains. From a simple x-ray, my family doctor was able to diagnose that I had multiple, visible cysts on my kidneys. He immediately referred me to nephrologists at Indiana University in Indianapolis for care and treatment. Under the guidance of Dr. Hellman, I learned that PKD was hereditary and had no cure, but the growth of the cysts could be slowed and controlled by high blood pressure medication and a renal diet. As a practicing lawyer and later a college professor, this frightened me at the time, so I tried very hard to follow the protocol and make all my follow up visits. I was able to stay off dialysis until the age of 58. Then I was on dialysis for four years before receiving a transplant in 2016. I nicknamed my kidney Woody, after my dad. Woodrow is a family name, and it has been every Jim’s middle name since my grandfather and continues today through my son.

Like all PKD, patients, I have had my ups and downs. I had days where I passed kidney stones uncontrollably, I have had anemia, cysts burst and back pain so bad I could not move. Until 2018, I had been hospitalized at a minimum twice a year with PKD-related complications. I was no longer able to continue in my profession. I lost my marriage and my home. Initially, I was very angry, bordering on rage. I watched my father die, and I was certain that this was my fate.

While I was on dialysis, I noticed that although I drove myself to and from treatments, most of my other clinic mates came to the center by ambulance and were moved to their chairs by gurney, wheelchairs, walkers or canes. At almost the same time, Central Management Services for Medicare began to send out notices of cuts to funds for dialysis centers. Cuts could mean some devastating things for myself and my clinic friends: loss of nurses, technicians, social workers and a close place to dialyze. I thought someone should do something. These people were too sick to fight back. I was one of the healthier guys, and with my background as trial lawyer, I slowly came to the conclusion that at least in our clinic, it would have to be me. This is how my kidney advocacy began.

I started a petition on change.org. I became very active on social media. I wrote over 100 letters to the editor on the subject and I joined as many major local and national kidney advocacy groups as I could, including the PKD Foundation. I wrote articles and blogs. I contacted my local and national politicians. I spoke to any group that would have me. I worked with other organizations and people to learn how to fight against political challenges leveled against the kidney community, which I continue to do to this very day. I have been very fortunate to have won awards for my advocacy.

I continue to be very active on social media. I post kidney-related matters almost every day on Facebook, Twitter, Instagram and Tumblr. I reach approximately 100,000 people every month. I run 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites. I have lectured on the subject of using social media to advocate for our fellow kidney patients to many large groups and kidney organizations.

The advice that I would give to other PKD advocates is to play to your strengths. Use what you do best to raise awareness for PKD/kidney disease. If you speak well, write well, are musically inclined, research well, run a kidney related business well or any other talent you do well, that is your best avenue to produce great results for your advocacy. Use your gifts to help others. I’m a full time kidney advocate now. It is a decision that I do not regret. I highly recommend it. Questions? Don’t hesitate to contact me. My friends call me Uncle Jim.

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Patient Education Disclaimer

This material is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. KidneyLuv makes every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.

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