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.
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.
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.
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: