Atypical hemolytic uremic syndrome (aHUS) primarily affects the kidneys but it can also affect numerous other organs in the body — what doctors sometimes call extra-renal manifestations. To better diagnose and treat these symptoms, a multidisciplinary team of specialists may be necessary.
If you’ve been diagnosed with aHUS, here is more information about what symptoms you may experience and the treatment team you may need to see.
aHUS most commonly affects the kidneys by causing small blood clots that lead to excessive damage to the kidneys, end-stage kidney disease, and ultimately kidney failure. A nephrologist specializes in kidney care, and performs tests to monitor and treat any kidney problems.
The small blood clots caused by aHUS can also affect your blood vessels. They cause inflammation in the lining of blood vessels and can lead to red blood cells clumping together and bursting. Hematologists diagnose and treat disorders of the blood vessels and blood cells, and may be an important member of an aHUS treatment team.
Cancer may be a trigger for aHUS in some cases. You may, therefore, need cancer treatment in addition to treatment for aHUS itself. In this case, you will likely meet with an oncologist who can tell you about the specific type of cancer you may have and inform you of treatment options.
aHUS is the result of irregular activity of a part of the immune system called the complement system in more than half of the cases. An immunologist can suggest the best treatment, such as plasma therapies if your disease falls in this category.
The central nervous system (the brain and spinal cord) is the most common system affected by aHUS after the kidneys, especially in children. Nervous system symptoms may include drowsiness, loss of feeling, or the inability to move part of the body, and seizures. Neurologists specialize in the diagnosis and treatment of disorders of the nervous system.
As an aHUS patient, you may also be at a higher risk of developing heart disease due to the damage and buildup of clots in the blood vessels that feed the heart muscles. A cardiologist can help monitor your heart for any damage and provide treatment if necessary.
In rare cases of severe aHUS, small blood clots can cause blockage and damage to the blood vessels of the lungs, leading to bleeding in the lungs and lack of oxygen in the body. A pulmonologist can monitor your blood oxygen levels and, if they begin to drop, provide treatment.
Small blockages in the blood vessels of the skin can sometimes lead to skin lesions, such as ulcers, in aHUS patients. A dermatologist can take skin biopsies for analysis and diagnose of aHUS. Skin biopsies can also help monitor how well treatments are working.
When the small blood clots affect the blood vessels in the intestines, this can lead to ulcers and bleeding. The clots can also lead to damage to the pancreas and liver. A gastroenterologist specializes in the organs of the digestive system and can identify and treat any of these issues.
Blood clotting and blood vessel damage can affect the eyes. Internal bleeding or loss of blood flow to certain portions of the eye can lead to vision problems, which should be investigated and treated by an ophthalmologist.
Pregnancy is a possible trigger for aHUS. If you have aHUS or a family history of the disease and are pregnant or thinking of becoming pregnant, you should discuss the possible complications with an obstetrician/gynecologist.
aHUS is the result of a combination of genetic factors and environmental triggers. Mutations in at least seven genes are associated with a higher risk of developing aHUS. A genetic counselor can explain how the disease might affect you and any future children.
Mental health professionals
Chronic debilitating illnesses such as aHUS can cause stress, anxiety, and depression in patients and their family members. Mental health professionals such as psychologists, psychiatrists, and therapists can help patients and their families cope with these feelings.
Last updated: Feb. 1, 2021
AHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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