For many families, the diagnosis of a muscle-wasting condition comes as a complete shock. Parents may have suspected something was wrong, however they rarely expect this diagnosis and seldom know anything about any muscle-wasting conditions. For others, there may be a known family history.
There is no right or wrong way to respond.
Muscular Dystrophy UK produces factsheets on most muscle-wasting conditions, and these provide more detailed information.
What happens now?
Depending upon the age of your child at diagnosis, there are a number of things you can do to assist him/her.
It is important to equip yourself with information and identify local sources of support, and have a follow-up plan from the clinic where the diagnosis was made.
What are muscle-wasting conditions?
There are around 70,000 people in the UK living with muscle-wasting conditions. Muscular Dystrophy UK brings together people affected by more than 60 rare and very rare progressive muscle-weakening and wasting conditions.
These conditions cause muscles to weaken and waste over time, leading to increasingly severe disability. They are part of a group of genetic conditions caused by ‘mutations’ in the genes, sometimes known as ‘genetic faults’. In some cases, the mutation is passed from the 6 parents to their children, while in others the condition is caused by a new mutation. Some conditions affect the heart muscle and vital breathing muscles too.
There is currently no cure or effective treatment for musclewasting conditions; however research is progressing. There have also been many recent and ongoing advances in the management of muscle-wasting conditions.
What shall we say to our child and when?
Coming to terms with the news that your child has a muscle-wasting condition can be extraordinarily difficult for you. If the diagnosis is recent, you may find things can be overwhelming. You may be worried about what the future holds for your child, and how you can help them to live as happy and independent a life as possible.
Many parents wish to hold off from telling their child about the diagnosis for as long as possible. They may feel that they are protecting their child.
Contact the Muscular Dystrophy UK care and support team, who can support you with helpful information.
They can also send you a copy of the booklet: When your child has a muscle-wasting condition: A guide to talking with your child about their condition.
What shall we say to our other children?
Siblings are likely to have questions (and often worries) about their brother or sister too. It can be difficult to judge how much to tell siblings, particularly if there is a large age gap. Generally, it is important to ensure the siblings don’t know more about the condition than the child living with it. It is a big responsibility to expect a child to hold on to this sort of information.
What shall we say to other adults in the family?
Unless there is good reason not to, tell your relatives the truth. You will need their support and understanding in the years ahead.
As these conditions are usually genetic, other family members may wish to be referred to their local clinical genetics department for advice. Be aware that other people may be frightened or upset by the news and may not react in the way you would expect.
You can talk about these concerns, in confidence, with the team caring for your child and your local clinical genetics department. They are used to dealing with such situations and will not pass on information about you or your child to other family members without your consent.
What if a relative is planning to have children or is pregnant?
If relatives are planning to have children, they can ask their GP to refer them to a genetic counsellor. If a relative is pregnant, she can request an urgent referral. Consider making your child’s relevant medical records available for the consultation. This is a common occurrence and genetic counsellors are skilled at, and used to, talking about the issues raised.
How shall we tell our friends?
What you say will very much depend upon how close you are to your friends. If you have a partner, decide together on the people you will share information with and, if you want to keep the information confidential, ensure your friends know that.
Some parents say they needed to give themselves time before sharing the information outside their own close circle. It can often be difficult coping with other people’s distress as well as your own.