Recently diagnosed

If you or someone close to you has just been diagnosed with myositis, we can help.

Not alone

It can be an unsettling time if you’ve been diagnosed with myositis or know someone who has – what is it? How do I even pronounce it? Is there a cure?

While myositis may be rare, you are not alone. Myositis UK has been providing help and funding vital research for over 30 years. We’re a small charity, but we’ve been there and we’re here to help.

Places to start

Here are some places to start if you need help understanding your recent diagnosis.

  • Explore the website. Across our website you will find information to help you better understand myositis and the different conditions. Start here.
  • Become a member. You can sign up to become a member of Myositis UK for free (if UK-based) using our online form, giving you access to more information and opportunities.
  • Join our Facebook group. We have a closed Facebook group you can request to join to connect with others in a similar position to you.
  • Discover our community zone. Not on Facebook? We also have a Community Zone where you can connect with others, hosted on a platform by Health United.
  • Contact us. If you can’t find what you’re looking for or are looking for specific information, you can always contact us. Please keep in mind Myositis UK is a small charity run mainly by volunteers, so responses may not be immediate. 

Things to remember

  • Being diagnosed with myositis is no one’s fault. While some people may have a predisposition to developing the illness, it is indiscriminate and not the result of lifestyle.
  • Myositis is not contagious – so reach out and be there for those recently diagnosed.
  • Everyone experiences myositis differently. Be careful when comparing yourself to others and don’t be disheartened.
  • There’s no cure – but there is help and support available. We can help you find it.

Where next?

What is myositis?

Find out more

Types of myositis

Find out more

Living with myositis

Find out more
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