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Listening to Learn: Patient Perspective on Autosomal Dominant Polycystic Kidney Disease

We are committed to empowering people with rare diseases across the globe, and our focus on uncommon medical conditions is unwavering. Beyond our current portfolio of therapies, our commitment to the rare disease community includes expanding our research efforts to focus on underserved rare diseases. While Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a newer area of focus for us, our roots in researching rare diseases that affect the kidney (nephrology) run deep.

ADPKD is the most common inherited kidney disease impacting approximately 140,000 people in the U.S.i,ii and approximately 174,000 in Europe.iii,iv For us, it’s a priority to put names and faces to these numbers to learn about the daily and life-long realities for people living with ADPKD. We must go beyond the statistics and speak directly with patients to better understand their journey and what life with a rare disease really feels like, looks like and sounds like. These patient voices, perspectives and experiences inform and inspire every aspect of what we do.

“People with ADPKD across six countries were interviewed to learn more about their disease diagnosis, the impact ADPKD has on their day-to-day life, and currently available resources to help manage the disease,” explained Mariah Lopshire, Associate Director of Market Research at Sanofi Genzyme. “Hearing from people impacted by the disease impressed upon me the severity and heavy disease burden that they experience. ADPKD truly impacts all facets of life for the person diagnosed and many times is a common thread between others within the family – children, parents, siblings.”

One patient shared how he had unknowingly lived with ADPKD for many years. He was active and enjoyed hiking, swimming, and spending time with friends. It was only when he found himself in the emergency room with a kidney infection that he realized he had been walking around with “two ticking time bombs inside [his] abdomen.” It became clear in that moment that he was facing a potentially serious health condition.

Watch to learn more about his ADPKD experience.

In ADPKD, fluid-filled sacs, called cysts, develop and enlarge in both kidneys.v People with ADPKD may experience pain in the stomach, side or lower back; kidney stones; urinary tract infection; blood in their urine; and/or high blood pressure.vi

About half of people living with ADPKD develop kidney failure, requiring dialysis or a kidney transplant by the age of 50.v ADPKD is responsible for up to approximately five percent of patients with end-stage kidney failure.vii

References

i Autosomal Dominant Polycystic Kidney Disease. National Institute of Diabetes and Digestive and Kidney Health Disease. Accessed August 2020. https://www.niddk.nih.gov/health-information/kidney-disease/polycystic-kidney-disease/autosomal-dominant-pkd.

ii Willey C et al. Analysis of Nationwide Data to Determine the Incidence and Diagnosed Prevalence of Autosomal Dominant Polycystic Kidney Disease in the USA: 2013–2015. Kidney Dis. 2019; 5:107–117

iii Willey C et al. Prevalence of Autosomal Dominant Polycystic Kidney Disease in the European Union. Nephrology Dialysis Transplantation. 2017; 32(8): 1356-1363. doi: 10.1093/ndt/gfw242.

iv Sanofi Analysis.

v What is ADPKD? PKD Foundation. Accessed August 2020. https://pkdcure.org/what-is-adpkd/

vi Symptoms: Autosomal dominant polycystic kidney disease. NHS. Accessed August 2020. https://www.nhs.uk/conditions/autosomal-dominant-polycystic-kidney-disease-adpkd/symptoms/

vii Chebib FT, Torres VE. Autosomal Dominant Polycystic Kidney Disease: Core Curriculum 2016. Am. J. Kidney Dis. 2016; 67: 792–810.

viii Chapman AB et al. Autosomal-dominant polycystic kidney disease (ADPKD): executive summary from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2015;88(1):17-27. doi:10.1038/ki.2015.59.

 

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