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aHUS: A Rare and Serious Kidney Disease

aHUS (atypical hemolytic uremic syndrome) is a rare and serious kidney disease that can occur at any age, but is most common in children under the age of 5. It is caused by a problem with the complement system, a group of proteins that help the body fight infection. In aHUS, the complement system is overactive and attacks the body’s own tissues, including the kidneys.

Symptoms of aHUS

The symptoms of aHUS can vary depending on the severity of the disease and the organs that are affected. Some people with aHUS have no symptoms, while others may experience symptoms such as:

  • Fatigue
  • Pale skin
  • Bruising easily
  • Dark urine
  • Decreased urination
  • Swelling in the hands and feet
  • High blood pressure
  • Seizures

Diagnosis of aHUS

aHUS is diagnosed based on a combination of medical history, physical exam, blood tests, and urine tests. A kidney biopsy may also be recommended to confirm the diagnosis and assess the severity of the disease.

Treatment of aHUS

There is no cure for aHUS, but there are treatments that can help to slow the progression of the disease and manage the symptoms. Treatment options include:

  • Plasma exchange: Plasma exchange is a procedure that removes the plasma, the liquid portion of the blood, and replaces it with fresh plasma or albumin. This can help to remove the complement proteins that are causing the damage.
  • Eculizumab: Eculizumab is a medication that blocks the activity of the complement protein C5. This can help to prevent further damage to the kidneys.
  • Kidney transplant: In some cases, people with aHUS may need a kidney transplant.

Prognosis for aHUS

The prognosis for people with aHUS varies depending on the severity of the disease and the organs that are affected. With early diagnosis and treatment, many people with aHUS can live long and productive lives. However, some people with aHUS may progress to end-stage renal disease (ESRD), which means that their kidneys stop working properly. If this happens, dialysis or a kidney transplant may be necessary.

What can you do to manage aHUS?

If you or someone you know has aHUS, there are a number of things you can do to help manage the condition and improve the prognosis:

  • Take all medications as prescribed by your doctor.
  • Follow a healthy diet.
  • Maintain a healthy weight.
  • Control your blood pressure.
  • Control your cholesterol.
  • Avoid smoking and excessive alcohol consumption.
  • Get regular exercise.
  • Follow up with your doctor regularly for monitoring and treatment.

You are not alone

aHUS is a rare disease, but there is a supportive community of people living with aHUS and their families. There are also a number of organizations that provide resources and support for people with aHUS and their loved ones.

If you have any questions or concerns about aHUS, be sure to talk to your doctor.

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  • Post last modified:2023-09-25

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