family life

There can be many emotional implications that result from daily management of such a complex and rare disease that are likely to affect you as a patient or caregiver—however, it is also important to consider other family members, relationships, and elements of family life that can be impacted by living with a Hunter syndrome diagnosis, and how you can work together to overcome these.

It can be challenging to tell those closest to you about Hunter syndrome. At least initially, your family and friends will likely be unfamiliar with the disease and therefore unsure on exactly what type of help you need from them and how best to support you both practically and emotionally. This is further complicated by the fact that no two families will be affected in exactly the same way; this means it is especially important to be as truthful as possible about your personal experience and what kind of help you’d appreciate from those closest to you.

Mother father and son hug

Spreading awareness about Hunter syndrome, its symptoms, and how it affects your family personally is therefore the first key step for your loved ones to learn how best to support you. However, there are also support groups available that can be a great resource to lean on. Not only could it be valuable to speak to those who have had similar experiences to you, but it can also be a great opportunity to learn from those with a more in-depth knowledge of Hunter syndrome.

As a caregiver, some of the emotional topics that may affect you can include: