Hunter syndrome patient hugging caregiver

Families have described their experience of Hunter syndrome as having constant worry about their child’s future and the progressive nature of the condition. Other common responses were worry or fear for their child’s pain, how their child will cope with having MPS II, and social isolation.

The different neurobehavioral symptoms of Hunter syndrome can have a negative impact on affected children and their families and cause considerable suffering. While it is important for families to have knowledge about the psychological and emotional impact of MPS II, it is equally important to know that support is available.

There may be "good days" and more challenging days, when symptoms are more severe. Symptoms may worsen with poor sleep, major schedule changes, or new experiences. Caregivers understandably feel great stress watching for any symptom changes; if symptoms are worse on a day after a bad night’s sleep, you may be inclined to believe that this is due to disease progression rather than fatigue. It is also common to be concerned that pain interferes with your child’s sleep but that they cannot communicate this adequately.

Similarly, many caregivers can also feel stress when triggers for tantrums can’t be identified and also worry that pain is the source. It can be very frustrating and stressful as a caregiver when you cannot fully understand your child’s needs or how to help. At home, you may also worry about the emotional responses of siblings. Open communication is key to helping siblings navigate their feelings and help you to understand the impact that living with Hunter syndrome can have on them as well.

Boy in blue shirt with coarse facial features

There is stigma and isolation in living with a child with a rare disorder. Outside the home, the neurological symptoms such as hyperactivity or reduced attention span can be misinterpreted by others as aggression or defiance. This can understandably cause issues at school and in other settings where others may not be fully educated about Hunter syndrome and this type of complex symptom expression.

Nurse in red scrubs supporting a woman and showing affection

Caregivers will often defend, explain, and advocate for their children, but some may give up and ignore others who do not understand, as it feels overwhelming and unjust. This could lead to families isolating themselves to minimize judgment or interference from others. Another reason for isolating could be to minimize safety risks to their child or others. Caregivers often worry about safety and are on constant alert, so don’t feel as though they can relax.

Caregivers act as their children’s behavior therapists, counselors, in-home nurses, special educators, protectors, and advocates. This can lead to issues that directly affect their health, such as sleep deprivation, and can also cause financial and vocational strains. Financial strain could be from costs of supportive management, specialized childcare or childcare for siblings, and physical adaptions that are necessary for daily life.

It can be difficult to manage vocational stress and some caregivers leave their jobs, which can add to financial worry and potentially a change in their identity or goals. Others continue to work; however, this can lead to stress too. Caregivers may worry about their child’s well-being while they are away from home, or about the need to take time off from work for various medical appointments.

Mother holding young son’s hand.

It is important to take care of yourself so that you in turn can take care of your loved ones. Some ways to maintain psychological health include maintaining employment, staying active, attending therapy, positive thinking, support from friends and family, and going out with friends. The internet is a helpful tool, although information can sometimes be frustrating and scary so make sure to look for reliable resources.

Some people use Facebook and find it beneficial for networking and supporting other families with a similar rare condition. In response to this, we’ve set up our own Hunter syndrome community Facebook page: MPS II and You.

The aim of this page is to be a place where those living with a Hunter syndrome diagnosis can speak to other members of the community about both their unique and shared experiences.