Hunter syndrome can affect both school and work life due to the symptoms each patient experiences, as well as the time patients and caregivers need to set aside in their schedules for medical appointments.
As Hunter syndrome is such a rare condition, it can be difficult for others that are unfamiliar with the disease to fully understand the experiences and challenges that come from living with Hunter syndrome. Below are some tips that may help others to better understand some of the extra considerations needed at school or in the workplace to accommodate you or your loved one’s needs.
Many people will not be immediately familiar with Hunter syndrome and its symptoms. Be prepared to explain your child’s condition to those who may need to be made aware.
Some might find it helpful to write up a short description of the key features of Hunter syndrome, specifying any that are particularly prevalent for your child. You can also add a list of any resources, equipment, and assistance that you may require to help manage Hunter syndrome while at school. This could save you both the time and potential emotional toll or stress of repeating the same information about your child’s condition and needs to multiple people.
Alternatively, or in addition to creating your own hand-out, have a look for existing educational resources to share with the school or specific teachers. This can help them to understand Hunter syndrome and its potential effects on school life and learning as best as possible.
Consider the types of activities that your child may need to be exempt from and make the school aware.
Speak to the school and teachers about the need to miss school for medical appointments, including travel times. Consider scheduling appointments around lessons that your child might be exempt from, such as physical education.
Explain that children with Hunter syndrome are prone to ear and respiratory infections, and may find it difficult to sleep, so they might be absent from school for sickness more often than other children—check to see if there are any systems in place for homework and class content to be brought home for children in these instances.
For children with the more severe form of Hunter syndrome, it can be valuable to discuss with the school or teachers any possible behavioral problems or developmental delay that might occur, which can make it difficult for them to participate and concentrate in class.
It can also be helpful to discuss any speech delay that may make it difficult for your child to communicate with their teachers and other children. Where applicable, be sure to offer advice on any strategies your child best responds to when in a state of distress.
Ask about the school’s facilities and equipment in place for children with physical and cognitive disabilities; there may be special classes available to better accommodate your child’s needs. However, be sure that the school properly understands the differences between Hunter syndrome and other conditions; this can help to ensure they are not placed into an inappropriate setting and their needs are not misunderstood.
Encourage teachers to update you regularly on your child’s progress and inform you of any possible concerns or additional facilities or resources that become available at school.
Look into any modifications or equipment the school and state could provide to assist your child, such as padded areas, carpeted areas, soft toys, soft desks, hearing aids, or speech therapy.
Be prepared to explain Hunter syndrome or look for resources to share with your employer.
Explain the need to attend or take your child to medical appointments, and be realistic about how long this takes, including any travel time.
Discuss how your employer can support you, such as offering flexible hours, part-time working, and working from home. For guidance on adapting your home for work, check out our Home Life page.
Your employer is also obligated to provide reasonable adjustments for employees that have disabilities, such as ensuring step-free access and enabling ground-floor working. We encourage you to research your rights and entitlements.
If you experience hearing difficulties and your workplace or school uses video call platforms, consider encouraging your colleagues/peers to switch on their cameras to assist with lip reading. Many video call platforms also provide accessibility tools such as auto-captions.
Screen readers allow people who are blind or visually impaired to use devices like phones and computers that have a screen. Many workplaces and schools utilize digital technology, and screen readers have made good progress in enabling technology to become more accessible.
And most importantly, remember to look after yourself and prioritize your health. Working beyond your limits could place your health at risk, so listen to your body and put your health first.