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Treating Autosomal Dominant Polycystic Kidney Disease

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People of Color with ADPKD: How to Find Support

Medically Reviewed By Jenneh Rishe, RN


Autosomal dominant polycystic kidney disease (ADPKD) may not be well known, but it’s essential to understand how it affects Communities of Color. 

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ADPKD isn’t frequently diagnosed among Hispanic and Asian people. However, Black and Hispanic people are more likely to need dialysis after severe kidney failure, are diagnosed at a younger age, and are less likely to receive a kidney transplant. One study suggests the mortality rate is higher for Black people with ADPKD.

What is ADPKD?

Irregular levels of calcium regulation and vasopressin cause ADPKD. This can cause fluid-filled cysts to appear on the kidneys. As these cysts grow, they can cause inflammation, impede urine flow, and damage kidney functions like waste removal and blood filtration over time. 

Institutional racism within the healthcare industry is a leading cause of disparities in treatment for People of Color. The effects of racism include poor treatment from medical professionals and a lack of financial support or health insurance if a patient can no longer work.

There are also differences among people living in different regions of the country, where access to adequate medical treatment and timely diagnoses can be limited. 

An early diagnosis of ADPKD can help slow the progression of the disease and improve quality of life. Learning more about ADPKD can make a difference in your health. Talk with your doctor about your medical history, prevention, and lifestyle changes to improve your well-being.

Symptoms, treatment, and resources

Symptoms include pain in the sides of the body, high blood pressure, and blood in the urine. There’s a 50% probability for a child to be diagnosed with ADPKD if one parent has been diagnosed.

The Polycystic Kidney Foundation offers advocacy, education, and support, including webinars, a patient handbook in English and Spanish, and information on treatment centers. The site also lists financial assistance resources.

Having a kidney specialist as part of your healthcare team is critical to managing ADPKD. Find a culturally competent one who has worked with People of Color and understands how racial disparities can disproportionately affect Communities of Color. 

You can also learn more about ADPKD at the American Association of Kidney Patients (AAKP), the American Kidney Fund, and the National Kidney Foundation

Ask your doctor about opportunities to connect with other People of Color living with ADPKD. A support system can make a difference as you navigate treatment and lifestyle changes. 

With resources, support, and choices, People of Color can successfully manage ADPKD.

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Medical Reviewer: Jenneh Rishe, RN
Last Review Date: 2022 Oct 31
View All Treating Autosomal Dominant Polycystic Kidney Disease Articles
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