Living With A Rare Kidney Disease (RKD)

Rare kidney disease (RKD) is estimated to affect 60-80 out of every 100,000 people in the United States. It can present with no symptoms and is often invisible to others. Those living with RKD may appear outwardly healthy and active, but may be living with the daily challenges of managing their disease.

“When people hear about kidney disease, they think of the commonly known CKD (chronic kidney disease) — which impacts millions, especially kidney disease related to diabetes and high blood pressure. Little is commonly known about RKD. Due to low public awareness, people living with rare kidney disease can face challenges in getting diagnosed and finding support.”

In the United States, kidney disease is considered rare if it affects less than 200,000 people. In Europe, it's less than 2,000 people. There are around 150 different types of rare kidney disorders. 

Abnormal hemolytic-uremic syndrome (aHUS)

This is one of the more unusual kidney diseases. It can occur at any stage of life and causes blood clots in the small veins of the kidneys. These clots can then restrict blood flow. Common symptoms include: a low platelet count, red blood cell death and kidney failure.

Polycystic kidney disease (PKD)

This disease causes cysts on the kidneys and often runs in families. These cysts can affect kidney function and lead to kidney failure. Treatment can slow cyst growth, but there is no permanent cure.

Fabry Disease

This is a rare, inheritable condition that can affect every organ in the body. These organs (kidneys, heart, brain) may receive less blood flow than is needed. Kidney failure can occur.

Glomerulonephritis

The blood vessels in your kidneys that determine the filtering system are called glomeruli. Glomerulonephritis damages the glomeruli and the kidneys can no longer do their job, leading to kidney failure.

IgA Nephropathy

IgA is an antibody produced by the immune system. With IgA nephropathy, these antibodies build up and harm the kidneys glomeruli. There is no known treatment, but medications can slow down the disease damage.

C3 Glomerulopathy

A rare kidney disease also called C3G. C3 is an immune system protein that can build up and damage the glomeruli. The main causes are: infection, genetic factors and abnormal protein build-up in the blood.

Cystinosis

A rare and inheritable condition that causes the body to build up cystine crystals (an amino acid). It mainly affects the kidneys and eyes. Kidney transplant is recommended.

“Many of these diseases are silent, and diagnosing rare kidney diseases can be challenging. Not only can symptoms indicate other conditions, but signs also don't show up until the disease has progressed, causing kidney damage.”

• Swelling of feet and hands.
• Overall body weakness and exhaustion.
• Shortness of breath.
• Aching on either side of the spine or on the lower back.

“Having a rare kidney disease can be challenging. Although there isn't a specific cure for most, you can now live longer and healthier with rare kidney diseases. Technological advancements and new medical interventions are accelerating our understanding of rare kidney diseases. To protect your kidneys, strive for a healthier lifestyle and have frequent checkups.”

Read stories from patients living with rare kidney disease HERE.