Navigating school and the workplace with Pompe disease

Last updated Nov. 1, 2024, by Susie Strachan

When you are living with Pompe disease, or are a caretaker to someone who has it, being a student or having a job is extra challenging as the progressive condition causes difficulties such as mobility issues and chronic fatigue.

But there are resources and support to help navigate classrooms and offices as well as ensure you are able to be as productive as possible in either environment.

Potential challenges

Going to school with Pompe disease may mean your child needs help from an aide, teacher, school nurse, or other staff member with tasks that other children can do independently.

For example, your child might need assistance with using the bathroom, moving between classrooms in a wheelchair, and eating lunch — especially if they have a gastrostomy tube.

Pompe Disease News columnist Keara Engle writes about her son Cayden’s move to a new school and some of the challenges of living with infantile-onset Pompe disease. Because of the severity of his Pompe disease, a nurse attends school with him every day.

“He needs help getting from place to place in his wheelchair because he can’t walk. He also requires assistance with using the toilet and getting his diaper changed because he has bladder incontinence,” she writes. “Lastly, he is fed via a gastrostomy tube and needs to be given lunch during school hours.”

If you have Pompe disease and work, you may have to think about arranging your schedule to allow for breaks to help manage fatigue as well as have time for medical appointments and treatments.

If you go into an office, the accessibility of the building needs to be considered. Adjustments to your workstation may be required for comfort and accessibility. Similar home adaptations can be made to a remote work space.

Certain job tasks, such as those requiring physical exertion or prolonged sitting or standing, can be more difficult with muscle weakness and cause pain, while respiratory problems can affect your stamina.

Pompe Disease News columnist Dwayne Wilson, who has late-onset Pompe disease (LOPD), writes about the physical changes and challenges of living with a rare disease and LOPD management.

Wilson’s job involved long hours of physically intensive work — carrying heavy equipment, bending, and driving thousands of miles each year.

“My body was slowing down, and I needed to find a position that wasn’t as physically demanding,” he writes. Fortunately, he was able to move to a desk job in 2017.

Despite telling doctors about his symptoms for years, it wasn’t until 2018 at age 50 that he was diagnosed with LOPD and started LOPD treatment.

“Thanks to my desk job, Pompe disease hasn’t limited me in my career,” Wilson writes. “After 33 years in the office equipment industry, I’m still going strong.“

Managing new environments

Adjusting to new spaces, whether at school or in the workplace, may take time as you familiarize yourself with the layout and learn how to move around comfortably.

If possible, visit the school or workplace ahead of time to identify any barriers.

Check to see if they have:

ramps and elevators
automatic door openers or lever door handles
accessible bathrooms with grab bars and room for mobility aids
wide hallways and doorways.

Pay attention to areas that may require adjustments, such as tight spaces that hinder movement, flooring that poses a slipping or tripping hazard, or a lack of designated accessible parking spaces.

Talk with the school staff or your employer about making modifications to ensure you can move around safely and access facilities like restrooms.

You may want to ask them to:

clear pathways between workstations, in meeting rooms, or between schoolroom furniture to allow space to maneuver
purchase ergonomic desks and chairs that help alleviate physical strain
give access to a break room or quiet classroom for resting or napping when tired
set up a wheelchair charging area equipped with the correct electrical system.

To help guide the conversation about school or office adaptations, prepare what you plan to say by making a list of your concerns and proposed modifications.

Consider asking your healthcare team for recommendations on necessary modifications. For example, an occupational therapist (OT) can provide guidance on modifying the physical layout of classrooms or office workstations to enhance accessibility and comfort.

Other healthcare professionals can support you with managing school or work with Pompe disease:

A dietitian can suggest a menu of foods that are easy to prepare and take to school or work, and address your healthcare needs, such as using a gastronomy tube or if you have difficulty swallowing.
A physical therapist can develop an exercise program to help maintain mobility and muscle function, and offer suggestions for modifying gym class programs or physically demanding activities at work.
A counselor or therapist can help you manage mental health aspects such as anxiety or stress from balancing school or work responsibilities.

When meeting with school staff or your employer about your chronic illness, frame the conversation about accommodations as a partnership. You can:

provide a brief overview of Pompe disease and how it affects you
explain why these modifications are needed for safety and accessibility
invite their input and be flexible about possible solutions
ask for a follow-up meeting to discuss the modifications and additional changes.

Beyond changes to the physical layout, there are other ways to improve accessibility at school or work.

If you find it challenging to communicate, using speech-generating devices or communication apps can help you express your ideas clearly to classmates or coworkers.

Schools may be able to offer the services of an OT who can work with your child in using adaptive equipment and technology, such as mobility aids and breathing aids.

Employers may include the service as part of their health and safety programs. Some health benefits packages may offer access to occupational therapy.

The OT may also help you explore strategies for improving daily care and school or work skills, suggest appropriate assistive equipment, and provide guidance on easier ways to do activities and tasks to help manage fatigue.

Time management and scheduling

Staying organized is essential for effectively managing your time at school or work when living with Pompe disease, which can cause fatigue and difficulty focusing.

By planning your daily activities and responsibilities, you can create a schedule that allows for rest periods and ensures you are not overexerting yourself.

Ask your school or employer if they can offer staggered hours or modify your schedule to help manage your workload. Starting later in the day or having extended breaks can help maintain your energy.

Work with an OT to set up priority lists for daily activities and assignments. The OT might help you identify which tasks are most important or time sensitive, allowing you to focus on those first. They can assist you in breaking larger assignments into smaller, more manageable steps

Communicate with your teachers or employer ahead of time to arrange flexible schedules or alternate assignments for when you need to take time off from school or work for medical appointments.

Available support

While there may be resources for individuals with Pompe disease in school and workplace settings, support may not be guaranteed for everyone.

Take the time to investigate available special education services for school children with disabilities and accommodations and legal protections that apply to employees with disabilities.

Check to see if your child’s school has resources or support staff to assist with academic adjustments.

Workplace accommodations can include flexible work hours, ergonomic workspaces, and access to assistive devices.

Understanding the legal protections for people with disabilities is important, as laws safeguard against discrimination. These protections can vary by state, so familiarize yourself with the regulations in your area.

To find out more about Pompe disease support, contact organizations that can connect you with support groups and resources. These include:

Advice for caregivers

Forming a partnership between school staff and yourself as a parent and caregiver can create a positive learning environment for your child with Pompe disease.

When your child is young, you may need to take an active role in supporting their academic journey.

This can mean staying in close communication with the school to discuss their needs, exploring available special education services, and ensuring the school understands how Pompe disease affects your child. It’s also important to set up an individual education plan that outlines specific accommodations and takes into account your child’s learning style.

Talk with school staff about modifications, such as accessible transportation or adapted physical education programs. For field trips in the early years, you might consider accompanying your child to help ensure their safety and comfort.

Engle writes about the orientation meeting that she and her son Cayden had at his new school with the principal, his new teacher, the school nurse, and the nurse who accompanies him to school every day.

They discussed everything from Cayden’s Pompe therapies, such as enzyme replacement therapy, to his daily schedule and pickup and drop-off areas.

Set up an emergency plan in case your child needs assistance during the school day. Include your contact information as well as alternate caregivers who can be reached if you’re unavailable. Make sure the school staff is familiar with the plan and any medical protocols specific to your child’s needs.

If you’re caring for an adult with Pompe disease who is working, there are ways to support them at their job, such as helping them get needed accommodations, by being an advocate for them, or just listening when they need to talk.

Whether they are going to school or working, encourage them to share with you their thoughts and feelings about their daily experiences so you can understand what they’re going through and be able to offer emotional support.

Pompe Disease 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.