Rare diseases and conditions affect fewer than 5 in 10 000 people. While the occurrence of individual rare diseases is low, it has been estimated that around 3.5 million people in the UK are living with one of over 7,000 rare diseases, such as Williams syndrome, muscular dystrophies or Huntington's disease.
A warm and loving relationship with you is the most important influence on your child’s development. Children learn the most from the people who care for them and with whom they spend most of their time, so everyday play and communication can help your child a lot.
Your child will probably also have a package or plan of therapies, supports and services that are customised to their particular development needs.
There are also some everyday things you can do to support your child’s development:
- Seek early intervention can make a big difference to your child’s life now and in the future. Your child’s medical team will help you work out what’s likely to help your child most.
- Seek practical information about raising children with this disease or condition. You can do this by speaking to other parents who’ve had similar experiences or by joining a rare disease or condition support group. People in these groups can often give you emotional support too.
- Talk with your child about their rare disease or condition at a level they can understand. You might need to explain to your child that they need to do things differently from other children. Or that they’ll have a lot of medical appointments and hospital visits.
- Promote your child’s mental health and wellbeing by tuning in to their feelings, building positive relationships, and helping them have a healthy lifestyle.
- Help others understand your child’s rare disease or condition. When grown-ups and children understand your child’s disease or condition, they can interact and play more meaningfully with your child. You can ask your child’s professionals or a support group for fact sheets or make your own to give to teachers, GPs, other parents and so on. Some standard answers can be good too. For example, ‘George’s bones break easily, but he can still play catch. Just touch his wheelchair rather than his body’.
- Health professionals are experts in your child’s health and medical care. But you’re an expert on your child. No-one knows your child better than you do, and it’s OK to speak up for your child’s needs, especially if you have concerns about any area of your child’s health, development or wellbeing.
Working with professionals caring for children with rare diseases and conditions
Most rare diseases and conditions are complex, so you and your child will probably work with a large team of medical specialists and health professionals.
At first this might feel daunting. But it’s best to see yourself as working in partnership with these professionals. When you combine your deep knowledge of your child with the professionals’ expertise in rare diseases and conditions, you’re more likely to get the best outcomes for your child.
If you have a partner, it’s a good idea for both of you to meet with professionals and attend appointments together. This gives you both a chance to share your knowledge about your child and better understand your child’s disease or condition.
You can find out more about the health and allied health professionals who might work with your child
Looking after yourself and your family
Looking after yourself physically, mentally and emotionally helps you give your child what they need to grow and thrive.
Here are some ways that you can look after yourself:
- Stay active, eat healthy food, and get plenty of rest.
- Consider organising respite care. Taking a break from caring for your child is good for you, your family and your child.
- Talk with your GP if you’re having trouble coping, or you feel you need support. You can also contact a mental health service.
- Talk with other parents of children with rare diseases and conditions. You can connect by joining a face-to-face or online support group.
- Support your other children by talking with them, spending time together and getting them extra support when they need it. Some organisations can help with sibling support
- Look after your relationships with others, like with family and friends. Focus more on your relationships with supportive people so that you can get the emotional support you need.