DIAGNOSIS
"What are the signs and symptoms of ADPKD?"
You might notice signs and symptoms but not know they’re from ADPKD.
That’s because this disease also affects other parts of the body.
UTIs or kidney
infections
High blood
pressure
Flank pain
Swelling in
your belly
Enlarged
kidneys
Brain
aneurysm
Protein in
your urine
Blood in
your urine
Kidney stones
Cysts that rupture
or become infected
Cysts on other
organs
Inflammation of
the colon
Conditions that can affect your kidney function, like high blood pressure, diabetes, and the sickle cell trait, are more common in Black people, potentially masking an ADPKD diagnosis. It is possible that these conditions may cause doctors to overlook an ADPKD diagnosis for some Black patients.
Ask your doctor for additional screening for ADPKD if you think this applies to you.
With many health conditions, you know something is wrong because you don’t feel well. ADPKD is different. Damage can be taking place in your kidneys for years while you feel perfectly fine.
Hear personal stories from people learning about their ADPKD diagnosis.
ADPKD=autosomal dominant polycystic kidney disease;
UTI=urinary tract infection.
"How will my doctor determine if I have ADPKD?"
Initially, patients may present with symptoms such as pain, high blood pressure, and blood in the urine. These symptoms alone are not enough to diagnose ADPKD.
An ADPKD diagnosis can be overlooked because
- People often do not experience signs until they are between 30 and 50 years old
- Conditions that can affect your kidney function, like high blood pressure, diabetes, and the sickle cell trait, are more common in Black people, potentially masking an ADPKD diagnosis. It is possible that these conditions may cause doctors to overlook an ADPKD diagnosis for some Black patients
This is why it is important to work with your healthcare team to
determine if you need additional screening for ADPKD
Black people are more likely to have the sickle cell trait. Black people who then have both the sickle cell trait and ADPKD may progress to end stage kidney disease faster than those without the sickle cell trait.
A nephrologist, who specializes in kidney disease, will determine if you have
ADPKD based on your family history and imaging tests.
Your family history of the disease
A positive family history is known in about 75% of patients with ADPKD
- Even though family members can experience ADPKD differently, knowing your history is helpful
- Genetic testing is available to help confirm a diagnosis of ADPKD
- Most common test to screen for PKD
- A safe test that uses sound waves and does not require the use of radiation or contrast dye to be injected
- Least costly screening method
- Takes pictures of the body using a magnet
- May cost more than ultrasound, depending on your insurance coverage
- May also be used to look at complications of ADPKD
- A sophisticated form of an X-ray
- Involves radiation
- May require iodinated contrast dye, which can be harmful to the kidneys
- More sensitive than an ultrasound for detecting small cysts
- May also be used to look at complications of ADPKD
The only way to find out if you have ADPKD is to talk to your doctor about getting screened.
ADPKD=autosomal dominant polycystic kidney disease;
CT=computed tomography;
MRI=magnetic resonance imaging;
PKD=polycystic kidney disease.
Want to know more about ADPKD AND KIDNEY SIZE?