SEARCH
Select Language

Life

Life has ups and downs for everyone. If you or your child has a rare disease, such as an autoinflammatory disease, your life may look a little different than other people’s and you may face added challenges or worries. Browse this page and explore information that you might find helpful.

How will our lives change?

Illnesses that occur in childhood and adolescence can certainly affect your routines and other aspects of daily living. Nutritional needs may become more important and treatment plans may have to be taken into consideration. You might have to do more planning and scheduling than before. Children with an autoinflammatory disease may find they can’t do things they used to be able to do before they were diagnosed – and that they can’t do everything their friends can do. They may also have to put up with pain and go to therapy sessions and hospital appointments, or even spend prolonged periods in hospital. This can be upsetting, and lead to feelings of being "different."

It’s important to try to make every day seem as normal as possible for your child – let them see their friends, go for a walk, read, watch TV or whatever makes them happy. You should also help them talk about their feelings so you can address their concerns.

It might also become more difficult to plan ahead because you can’t predict the severity of symptoms tomorrow, next week or next month. Travel plans, or even just plans to go out for dinner, may have to be put on hold or made at the last minute. You might have to learn to live for the moment and to simply make the most of each day, one day at a time.

A good way to deal with change is to maintain a caring and open environment – and to find support for your child and yourself. This can include people who are going through something similar to your own experience, with whom you can speak openly about your feelings and challenges. You should also keep family members and friends informed about your situation.

 

Where to seek additional support

If a member of your family has an autoinflammatory condition, chances are you will need support. Good places to start include your own or your child’s doctor, the hospital department you visit, community health clinics, and local support groups. Friends and family can also be an invaluable source of support. You can also reach out to rare disease support groups who will understand what you are going through. For further information on rare disease support groups please see our list of links.

 

Telling others about living with autoinflammatory disease

If your child has an autoinflammatory disease, you might not be sure how to explain to friends, relatives, your child’s nursery or school teachers and classmates what is actually going on – why your child is tired, unable to take part in certain activities or absent from school or family get-togethers.

The more informed people are, the more helpful and understanding they are likely to be. So, where do you start? Here are some helpful hints:

  • Be open and honest
  • Start at the beginning – explain when and how your child was diagnosed with an autoinflammatory disease, what the symptoms are and how they affect your child
  • Explain that your child’s condition changes from day to day, and that some days are better than others
  • Emphasize that your child is still a child and needs to be treated like any other child to help maintain their self-esteem
    • The difference is that sometimes they might not be able to do everything other children do (give examples) and they might get ill more often than other children
    • If your friends, relatives or colleagues don’t understand or are not aware of what you are experiencing, they might be wondering why you have withdrawn, or are not as available as you have been in the past for social activities or even work. For more information and advice on managing your own relationships, check out the Taking care of yourself section.
Kids' corner

Want to help your child understand their illness? Why not visit Kids' Corner with your child and read Paula and Tim’s explanation of autoinflammatory disease and their experience of attending school and after school activities with their condition.

Learn more
Kids' Corner

NPR/ACZ885/0008E