Coping with aHUS

Coping with aHUS

Atypical hemolytic uremic syndrome (aHUS) is a rare, progressive disease that results from tiny blood clots forming in small blood vessels, particularly those of the kidneys. aHUS often leads to multiple problems, including hemolytic anemia (destruction of red blood cells), thrombocytopenia (low platelet count), and kidney failure. If not properly managed, aHUS can be life-threatening.

While therapies such as Soliris or plasma exchange are usually prescribed once a diagnosis is confirmed, it is important for both patients and caregivers to proactively monitor disease symptoms and take necessary precautions.

Keep track of treatments and blood test results

Having a personal medical record handy is very important. This record should contain basic information about a patient, including height, weight, blood pressure, and heart rate. Medications being taken and their frequency and dosing, alongside any side effects or allergies, should also be documented.

This record should also include parameters derived from an aHUS diagnosis, including blood counts, metabolite levels, and liver function test results among other applicable diagnostic results.

Here’s an example of one such tracker designed by the aHUS Foundation. Patients can customize it to better meet their specific needs.

Stay clear of environmental triggers

Although aHUS is largely a genetic disease, symptoms often appear as a result of environmental triggers. These include pregnancy, cancer, infections or bad colds, and certain medicines. Wherever possible, make sure to avoid contact with allergy-causing agents such as pollen and animal fur, especially if you’ve already had an allergic reaction to these agents earlier.

While taking medications, always ask your aHUS specialist the likelihood of them triggering an aHUS attack.

Always ensure that you eat or drink only non-contaminated food and water. You might also want to use single-use disposable N95 or above air filter masks to minimize risk from air pollutants, and air borne bacteria and viruses.

Have an emergency room letter handy

In cases where you may need to be admitted to the hospital for any other disease or trauma, it helps to let doctors know that you have aHUS. aHUS is a rare disease, so not all doctors or nurses will be familiar with or experienced in dealing with its symptoms. An emergency room (ER) letter can alert treating doctors to your aHUS, and let them know its risk factors and additional laboratory tests that may be required. This letter should also include contact details for your aHUS physician.

The the aHUS Foundation provides a sample format of an ER letter on its website.

Network with other patients like you

Networking with other patients can go a long way in assuring support and gaining access to important resources and meetings. You can find information about research news and upcoming clinical trials for potential new therapies, along with other points of interest, on our website. Various aHUS organizations also provide information and support, including:

 

Last updated: September 3, 2019

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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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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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