If you are a family member or a friend of someone who has Hunter syndrome, it can be difficult to know how to help them. Learning about Hunter syndrome is a great place to start. This can help you to understand more about your loved one’s experiences with Hunter syndrome, think about ways to support them, or even offer suggestions they may not have considered. For example, understanding how Hunter syndrome affects your loved one’s life can help you understand why they might not be able to join in with social activities or why a parent or caregiver is anxious when away from their child.
It can be difficult to find easily understandable rare disease-related information, but a lot of reliable and useful resources can be found online. Most importantly, know that you can be a big support for your family member or friend just by being there for them and doing your best to understand what they are going through.
Talk to your doctor if you are concerned about any aspect of emotional and physiological management for you or your child.
Visit the National MPS Society to find a range of comprehensive resources for caregivers, including further advice on complex emotional situations.