Talking to Your Employer About aHUS

Brian Murphy, Ph.D. avatar

by Brian Murphy, Ph.D. |

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If you have atypical hemolytic uremic syndrome (aHUS) and are working, you may want to consider speaking with your employer about your disease.

Here are some things to help you decide what is best for you to do.

What is aHUS?

aHUS is characterized by low levels of circulating red blood cells, a low platelet count, and high levels of urea in the blood.

Symptoms include feelings of illness, fatigue, irritability, and lethargy. As the disease progresses, kidney damage is likely and may lead to kidney failure. The disease can also affect the brain, gastrointestinal tract, liver, lungs, and the heart.

How might aHUS affect your work life?

The symptoms of aHUS can potentially impact your ability to work.

Fatigue can make tasks harder to accomplish, and brain fog due to kidney disease can leave you unable to focus well.

aHUS can also cause to pain and problems with vision, which could make certain tasks more difficult.

Damage to blood vessels in the brain may also cause seizures, and a possible emergency situation at work.

Flares in aHUS symptoms and  treatments such as dialysis may require you to miss a fairly large number of workdays.

Possible advantages of speaking up about aHUS

A research article involving five different patient focus groups investigated the impact of chronic diseases on the work environment. Results showed that most patients found disclosing their condition to their employer and coworkers helpful in making necessary adaptions, and in gaining support and understanding.

Having your employer and coworkers know about your condition can also help you in being more comfortable in case of an emergency, or a need for time away from work.

Negative experiences led some participants, particularly those who were not working at the time of this study, to prefer not to disclosure a chronic illness to employees and colleagues.

Points to consider include how difficult it would be for you to not disclosure your condition, and whether non-disclosure might endanger you or others.

Before talking with an employer

If you decide to speak to your employer, it is important to come up with a plan before that meeting.

You should have a good idea of what information you want to disclose, and what you are hoping to get out of the meeting. This could be certain accommodations like more flexible hours, opportunities to work from home, or the need for a different role in the workplace.

Before you meet with your employer, you may also wish to speak to your doctor. They can tell you of the possible work limitations aHUS may cause you, and accommodations that could help. Your doctor may also help you in coming up with a quick summary of your disease, or the difficulties you might be experiencing. A doctor, or a patient association, could also recommend educational materials that you could share, helping your employer to better understand your disease.

Listing treatments that you are undergoing can also help others in understanding how they might affect your work. This  information could also be helpful in an emergency.

You may want to check your company’s policies, and your employee handbook regarding anti-discriminatory rules in place or special programs that may be available to you. Refreshing your knowledge of government and other legal protections available to people with chronic illnesses or disabilities could also be helpful.

During the discussion with your employer

You do not necessarily have to tell your employer that you have aHUS should you choose not to and they do not ask. Rather than detailing your disease, it also might be best to focus on points important to you both: how aHUS could affect your work, what accommodations you might need.

Many companies have a human resources department. You can go through them if you do not wish to discuss your situation with directly with a supervisor. Human resource officers also should be knowledgeable about company policies, and can recommend steps to ensure you receive the accommodations you need.


Last updated: March 8, 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.