Has your child been diagnosed?
For many families, a diagnosis of a muscle-wasting condition comes as a complete shock. We're here to help.
Different people react in different ways to difficult news – there is no right or wrong way to respond. Respect your feelings and take your time. There are a number of things you can do to help. Equipping yourself with information and identifying local sources of support will help. It is also important to have a follow-up plan from the clinic where the diagnosis was made.
For more information on any of the issues raised below, please contact us:
0800 652 6352 (freephone)
You may find the following points helpful to consider:
|there is no right or wrong way to react||
and your feelings are likely to differ from day to day. You may feel more fragile some days than others, but long term, there will be more good days than bad.
|some describe it as a giant roller coaster||
dealing with a diagnosis can feel a bit like travelling down an unfamiliar path which you didn’t choose. It can be very challenging when the vision you had for your child's future is changed by something beyond your control.
|grieving is exhausting||
so it's important to allow time for yourself each day. You may want to try talking to a counsellor - ask your doctor for a referral if so. We all need support, and asking for help is a sign of strength.
|no two people are alike||
you may find that your partner copes with the situation differently to you. Respect your differences and accept that this is normal. Sometimes one person wants to talk while the other doesn’t. Try to negotiate some agreed ‘talking time’ to help meet both partner's needs.
|many parents feel responsible||
we are not routinely screened for muscle-wasting conditions, so if you have just found out that you are a carrier of the condition through genetic testing, you will have had no prior knowledge of this. Please remember that you are not to blame in any way for your child's condition.
If you were aware of your carrier status, you have just been true to yourself and made choices in line with your beliefs- please remind yourself of this.
|more information for parents||
the following publications are available for parents: