Keeping active and doing things you enjoy can help you cope with the big challenges of Juvenile Huntington’s, whether you have the disease yourself or you’re caring for someone who has it. It can help to combat feelings of anxiety and stress, provide opportunities to make new friends, and bring more joy and fun into your life.
Having Juvenile Huntington’s doesn’t need to stop you from visiting places and going on holiday.
There are a wide range of charities who offer ‘special days’ for children with illnesses or disabilities, and some of these support young adults too. These can be an opportunity to do something really fun. Contact your local Specialist Huntington’s Disease Adviser (SHDA) or our specialist Juvenile Huntington’s Adviser for more information.
Some organisations provide holidays and short breaks for children with disabilities, either with or without their families. Your social services department, GP or health worker can give you a list and may be able to make a referral to some of the organisations for you.
Some useful organisations:
HDA’s specialist adviser on Juvenile Huntington’s, Helen Santini, can help you find specific information about leisure activities, holiday and travel. You can reach her on firstname.lastname@example.org or 01279 507656.