Hunter syndrome impacts many aspects of life, and if you are growing up living with Hunter syndrome, there will be lots of issues to consider if you wish to become more independent. This guide may help you start thinking about some of these issues.
Many adults who have Hunter syndrome can live full and enjoyable lives. Some adults who are more mildly affected by Hunter syndrome have skilled jobs, are married, and have had children.
Transitioning From Pediatric to Adult Healthcare
As you get older, you are likely to move from being cared for by a team of healthcare professionals who specialise in caring for children (paediatricians), to those who specialise in caring for adults.
The healthcare team might help coordinate this transition to help it go smoothly, and it might be the case that your current healthcare professional or support worker becomes the main coordinator of the transition, overseeing the process and putting you in contact with your new team, and showing you how to access other support services. You may meet your new adult healthcare professionals before your transition, perhaps in a joint appointment, and there may be peer support groups that you might find helpful as you develop your independence.