Active life -aHUS Agenda Topic 13

An illness like aHUS can have an impact on a normal active life during the acute stage of the illness and after. The agenda refers to education and work but should include recreation too and a separate question was asked of our expert.

How does living with aHUS impact on education and work?

This was our expert’s response:

“Living with atypical hemolytic uremic syndrome (aHUS) can have various impacts on education and work, and these effects can vary from person to person. Some common considerations include:


  1. Missed School: AHUS episodes or treatments can lead to missed school days or periods of reduced academic attendance. This can affect educational progress, and it may require additional support, such as tutoring.
  2. Adjustments: Individuals with aHUS may require adjustments in the classroom, including extended time for assignments or exams, special accommodations, or an individualized education plan (IEP) to address their unique needs.
  3. Emotional Impact: Living with aHUS can be emotionally challenging, and this may impact a student’s mental well-being and ability to focus on schoolwork. It’s important to address these emotional aspects through counseling or support.


  1. Employment Flexibility: AHUS patients may require flexibility in their work schedules to accommodate medical appointments or treatment. Telecommuting or part-time work may be options.
  2. Fatigue: Fatigue, a common symptom of aHUS and its treatments, can affect work performance. Employers and employees may need to consider adjustments to workload or work hours.
  3. Psychological Impact: The emotional and psychological impact of living with aHUS can extend to the workplace. It’s important to address stress and anxiety to maintain work productivity and job satisfaction.
  4. Career Choices: Some individuals may need to make career choices based on the flexibility and healthcare benefits offered by their employer.

In both education and work settings, open communication with teachers, professors, employers, and colleagues is essential. Understanding and awareness of aHUS and its potential impact can lead to more supportive environments.

Additionally, some aHUS patients have successfully pursued education and careers while managing their condition, often with the support of healthcare professionals, family, and employers. The degree of impact on education and work can vary, and many individuals find ways to overcome challenges and lead fulfilling lives.”

And what about recreation

“Living with aHUS can have an impact on recreation too, as the condition may necessitate certain lifestyle adjustments and considerations. However, the extent of the impact can vary among individuals based on factors such as disease severity, treatment, and personal preferences. Here are some ways in which aHUS can affect recreation:

  1. Fatigue: aHUS and its treatments can lead to fatigue, which may limit one’s energy and ability to engage in recreational activities. Rest and pacing oneself may be important.
  2. Treatment Schedules: Complement inhibitors, such as eculizumab, often require regular infusions. Scheduling these infusions can affect travel plans or participation in certain activities.
  3. Physical Limitations: Some individuals with aHUS may experience physical limitations, especially during active disease episodes or due to complications like kidney damage.
  4. Psychological Impact: Dealing with the emotional and psychological aspects of living with aHUS can affect one’s interest and motivation for recreational activities.
  5. Support and Adaptation: Individuals with aHUS may need to adapt recreational activities to their physical and emotional needs. Support from friends and family can play a crucial role in making recreation more enjoyable and manageable. Despite potential challenges, many aHUS patients find ways to continue enjoying recreational activities. It’s important to communicate openly with healthcare professionals and to make adaptations that suit individual needs and preferences. Maintaining a balanced and fulfilling lifestyle, including participation in recreational activities, is an important aspect of overall well-being.”

So answer to this question is as our expert says “it depends on the individual’s circumstances”. There is no reason why those with complement controlled or inactive even with some kidney loss should not have an active life. Children in particular seem to bounce back better from an episode of aHUS and are often described by their parents as “ normal active “x” year olds”.

The case for expensive complement inhibitor treatment is that aHUS patients, including those with transplants, can function much better than without it when needed. Treatment when needed starts as soon as possible after aHUS manifestation and is dependent on a rapid diagnosis. Rapid diagnosis depends on clinical factors discussed previously.

in a way this question is about the health outcomes brought about by successes or failures of all the other topics in this research agenda.

Article No. 636

Previous articles

Atypical HUS & School

Atypical HUS & School

Atypical HUS and School: Information about teaching & learning. Learners of any age may be affected by chronic illness or a rare disease like aHUS. What schools and employers should know about people living with atypical hemolytic uremic syndrome (aHUS)


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