aHUS and School

A rare chronic illness such as atypical hemolytic uremic syndrome (aHUS) can make going to school more stressful and difficult for your child, and for you as a parent.

Here are some tips that can help your child with aHUS succeed in school.

How can aHUS affect schooling?

Symptoms of aHUS can vary from person to person and can be short-term (acute) or long-term and thus chronic.

The disease is characterized by the formation of small clots in the blood vessels. These clots can lead to blockages and also can trigger red blood cells to rupture, causing anemia. These small clots primarily affect the kidneys. However, they also can affect other organs and systems in the body such as the heart, lungs, and gastrointestinal tract. An estimated 10-48% of patients have involvement of the nervous system.

Such nervous system involvement can lead to issues such as seizures, vision or hearing problems, trouble walking, and learning or developmental delays. If your child has any of these issues, they may affect how well your son and daughter may do at school. Special support services may be needed to ensure your child’s success in the classroom.

How can I help my child succeed at school?

There are a number of ways in which you as a parent can help increase your child’s chances of success at school if he or she has HUS. Frequent communication with the school staff and teachers is key. Discussing your child’s disease and his or her symptoms can help both you and the school understand how best to manage your son or daughter’s education.

The following suggestions may be helpful in ensuring your child’s successful schooling.

File a treatment plan with the school

A treatment plan is a guide with information about your child’s disease. It includes information about the symptoms your child experienced in the past or may experience in the future. It also contains information about any treatments the child is receiving and the possible side effects that might affect schooling. Finally, it has information about any medications that your child might need to take during school, including dosage information.

You should update the treatment plan after each doctor’s visit. Make sure that all contact information is current, as well, in case the school staff need to reach you or your child’s physician.

Some patients with aHUS may experience seizures. So, it is important to make sure the school knows what to do if this occurs.

Inform teachers of any restrictions

Every child is unique so it is important for you to talk to your child’s physicians about any restrictions in exercise, diet, or class time that should be implemented. Any such restrictions should be discussed with your child’s teachers, so that they know what to do in the event of problems occurring during the school day.

Shortness of breath is a common symptom among people with aHUS. Thus, your child may require modifications to physical education programs. Several other symptoms of the disease, including anemia and sleep disorders, can lead to chronic fatigue, which can affect a student’s ability to focus in class or participate in physical activities.

Ensure special accommodations are in place

If your child has trouble moving between classes quickly due to fatigue, shortness of breath, or mobility issues, you should discuss rearranging their schedule with the school. Or you could check for any accessibility accommodations. The school may have elevators that could allow your child to avoid stairs, for example. You also can discuss allowing the student more time to get to classes and the teacher not counting them as tardy if they need longer time.

Your child may miss classes due to symptoms of the disease, such as acute aHUS attacks, or for treatments including plasma exchange therapy or dialysis. It is important to have a plan for these days to allow your child to be able to receive and make-up assignments so he or she does not fall behind.

Discuss the potential need for an IEP or 504 plan

Depending on the extent of your child’s disability, it may be beneficial to have an individualized education plan (IEP) or a 504 plan in place. Both plans establish what accommodations, modifications, and possible support services the school will provide for your child. An IEP is covered under the Individuals with Disabilities Education Act (IDEA). It ensures special education services for children with specific disabilities in the public education system. A 504 plan, meanwhile, is covered under Section 504 of the U.S. Rehabilitation Act of 1973. It features a broader definition of disabilities.

Last updated: Dec. 7, 2020

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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.