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Treating Autosomal Dominant Polycystic Kidney Disease

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6 Misconceptions About Autosomal Dominant Polycystic Kidney Disease

Medically Reviewed By Harshil Matta, DO

Autosomal dominant polycystic kidney disease (ADPKD) is a severe but well-researched genetic disorder. But myths about how ADPKD develops and progresses can interfere with healthy outcomes.

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Autosomal dominant polycystic kidney disease (ADPKD) is a genetic condition that causes fluid-filled sacs (cysts) to form in the kidneys. These cysts can grow large and cause severe symptoms and health complications, including pain, high blood pressure, and, ultimately, in many cases, kidney failure.

This article addresses several myths and misconceptions surrounding autosomal dominant polycystic kidney disease. The better you understand the realities of ADPKD, the better prepared you may be if you or someone you know is diagnosed with the condition or is currently learning to cope with it.

Myth 1: ADPKD is a rare condition

ADPKD is the most common form of polycystic kidney disease. Research suggests the condition affects about 4.26% Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source of the general population, though the figure may be larger because many people with the disease may not know it.

Research suggests males and females appear to develop ADPKD in equal numbers. However, female prevalence is higher at younger ages while male prevalence increases at older ages.

Myth 2: You can’t develop the condition without inherited a mutated gene

Most cases of autosomal dominant PKD result from inheriting mutations. However, 10% of ADPKD cases occur spontaneously, without an inherited gene. In these cases, there is no apparent reason for the gene mutation to occur.

Of the inherited cases, about 85% Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source of them are caused by a mutation of the ADPKD1 gene. The remaining 15% of inherited cases stem from a mutation of the ADPKD2 gene. The term “autosomal” means the particular gene is located on one of the non-sex chromosomes. “Dominant” means only one parent must pass down the mutation for a person to inherit the disorder.

A child who has one parent with a mutated ADPKD gene has a 50% chance of developing the condition. A “recessive” disorder requires two parents to pass down the gene.

Myth 3: Nothing can affect the severity of ADPKD

Two important factors can affect the severity of the disease: modifier genes and environmental factors Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source . Modifier genes can affect how faulty genes behave.

In cases of ADPKD, modifier genes may influence the development and progression of the disease. Environmental factors impacting ADPKD severity include aggressive blood pressure control and other healthy lifestyle behaviors supporting healthy kidney function. As your physician advises, they might consist of regular physical activity, smoking cessation, stress management, and maintaining a moderate weight.

Myth 4: ADPKD symptoms usually appear in childhood

Some children are diagnosed with ADPKD as infants, but most people are first diagnosed after age 30. This is true in part because symptoms tend not to develop until cysts have grown large enough to affect kidney function. Because symptoms tend not to appear until later in life, ADPKD is sometimes called “adult PKD.” Some initial symptoms can include pain in the sides or back and blood in your urine.

Myth 5: Caffeine consumption can worsen ADPKD progression

A 2015 study examining many factors that might affect APDKD outcomes suggested that people with the disease should avoid or limit caffeine, which may affect some enzymes involved with cyst growth in the kidneys. However, a follow-up study in 2018 suggests that caffeine likely has little influence on ADPKD progression.

Myth 6: There is no treatment for ADPKD

While there is currently no cure for ADPKD, there are treatments to help manage symptoms and slow the progression of the disease. Over-the-counter (OTC) pain relievers, such as acetaminophen or ibuprofen, may help manage the pain caused by the cysts. Surgery to remove cysts may also help ease the pain, but it will not have a long-term effect on kidney function or halt the progression toward kidney failure. If kidney failure does develop, a kidney transplant or regular dialysis may be options.

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    1. Aung, T., (2021). et al. Autosomal dominant polycystic kidney disease prevalence among a racially diverse United States Population, 2002 through 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8986058/
    2. Autosomal dominant polycystic kidney disease. (2017). https://www.niddk.nih.gov/health-information/kidney-disease/polycystic-kidney-disease/autosomal-dominant-pkd
    3. Autosomal dominant polycystic kidney disease. (2015). https://rarediseases.org/rare-diseases/autosomal-dominant-polycystic-kidney-disease/
    4. Chapman, A., et al. (2015). Autosomal-dominant polycystic kidney disease (ADPKD): Executive summary from a kidney disease: Improving global outcomes (KDIGO) controversies conference. https://www.kidney-international.org/article/S2157-1716(15)32146-8/fulltext
    5. Cordido, A., et al. (2017). The genetic and cellular basis of autosomal dominant polycystic kidney disease — A primer for clinicians. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5741702/
    6. McKenzie, K., (2018). Relationship between caffeine intake and autosomal dominant polycystic kidney disease progression: A retrospective analysis using the CRISP cohort. https://bmcnephrol.biomedcentral.com/articles/10.1186/s12882-018-1182-0


Medical Reviewer: Harshil Matta, DO
Last Review Date: 2023 Mar 22
View All Treating Autosomal Dominant Polycystic Kidney Disease Articles
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