Or waiting for a diagnosis?
Hearing about a diagnosis or possible diagnosis of a muscle-wasting condition – whether for yourself, your child or somebody else you’re close to – can often be a shock. We understand because we’ve been told this by people we’ve been supporting in this situation.
Whether you’ve recently been diagnosed, or have been waiting for a diagnosis for some time, we’re here to help. We want to use our experience to help you and your family find out about the support that’s available so you can live as independently and as well as possible.
We know a lot of people living with muscle-wasting conditions. We also know what support is available on the NHS and elsewhere and what you’re entitled to.
If you’d like to speak to someone about your new diagnosis, please call our care and support team. They are great listeners. Even though they aren’t trained counsellors or doctors, if they can’t help you themselves they usually know who can.
Our Freephone helpline is open Monday, Wednesday, Thursday and Friday 10am-4pm, and Tuesday 10am-6pm. Call 0800 652 6352 or email the team if you’d prefer and they’ll get back to you.