Myositis Friends Support Network

We aim to provide people with a safe place they can come to and discuss, seek advice and share their triumphs, in their ongoing fight against Myositis

Our Aims and Objectives are:

  • Provide support to all sufferers, carers and families
  • Raise awareness of all the myositis diseases
  • Raise funds to support our objectives

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MYOSITIS is a rare group of conditions of which the main sectors are, POLYMYOSITIS(PM),INCLUSION BODY MYOSITIS(IBM),  DERMATOMYOSITIS(DM), and JUVENILE DERMATOMYOSITIS (JDM) together with ANTISYNTHESE SYNDROME and other associated conditions.

FRIENDS with myositis decided to form this group after meeting at a MUSCULAR DYSTROPHY event to extend  the circle of friendship to others.

SUPPORT for all of our members is our primary aim.

NETWORK best describes the group of over three hundred active members in the U.K. Who mainly use FACEBOOK as a medium to contact each other as well as private messaging  to exchange news, experiences and non medical advice.

 

20 thoughts on “Myositis Friends Support Network

  1. Last month it was confirmed that I have IBM. I’m seeing Dr Hilton-Jones at the JR hospital in Oxford, where I live. Thank you for setting up a website and Facebook page where we can give support to one another. It’s quite difficult to get family and friends to understand what Myositis is as no one has heard of it, as I’m sure most of us hadn’t until diagnosed.

  2. Hi there.
    Would I be able to join here or your FB group.
    I was diagnosed with IBM but have never been part of a support group.
    Many thanks.

    1. Hello Ivan,
      We welcome you to our website and to our closed Facebook group, the internet address for the closed group is on this website’s contacts page. Request to join and we will approve and when joined maybe you could tell us more of your story with IBM. We look forward to hearing from you.

  3. I was diagnosed with IBM some years ago and although I am on a annual review programme at the John Radcliffe I find this a very lonely disease as few people have heard of it even G.P’s. It would be so nice to be able to talk to others in a similar situation.
    Regards, Margaret Young

    1. Hi Margaret. I have IBM and see Dr Hilton Jones at the John Radcliffe. Where do you live? I’m in High Wycombe, Bucks. I would be happy to chat to you. Kind regards – Val Foreman

  4. Hi. I’m Gill and have IBM. I have recently moved from North London to Norfolk. I have now been put in touch with David Morgan (very helpful) and look forward to attending the meeting in Cambridge. I feel I will benefit more from talking to others with IBM than the consultants I have been under. Thank you for taking your time to read this and hopefully I will get to meet some of you in April. Take care.

  5. Is this a new group? Found this via an e-mail from Muscular Dystrophy which ended up in my Spam folder. I have had contact with the Myositis UK forum but have not found it very useful so don’t check it much. Is this a replacement? The best thing I have got from it was details of how to get a four inch thick cushion made. Brilliant. I am seventy and live just outside Penzance. I was diagnosed about five years ago and am now pretty housebound as I can no longer drive or use public transport. It would be great to be in touch with other people in this area. I only know of one other person this side of Truro.

    1. Hi Elizabeth. Thankyou for coming to our group. I will let you know when we have a joining page. All the best Joy

  6. Hi, I too have IBM but an added part is Dysphagia.This is the first time I have noticed others with the same condition.

    It took 8 years for them to diagnose me. I am now 66 and was very active both at home and had an active job which I enjoyed.
    I have had to finish work and I am very limited to what I can do at home.

    I was back and forth the doctors, and the only relief I found was when they finally diagnosed it, since they made me feel I was imagining the whole thing. The story is a lot longer than I can write here but wanted to make contact. Thanks and I am glad I received this e mail.

    1. Hello Robert, we are glad you found us too. Your story about waiting for a diagnosis or worse, getting mis-diagnosed is all too common. I think the statistic for those with IBM that have dysphagia is about 50%, but that particular symptom makes the disease much harder to live with.
      But you have to be positive and accept and adapt…….I find that physio, a limited amount of exercise and hydrotherapy go a long way to ease some of the muscle aches and pains.
      I don’t know if you like Facebook or not, there are about 120 of us on a closed group (address on contact page) where we discuss diverse subjects that concern us. You are welcome to join! And if you would like to join us in Cambridge on 9th April we are having a “Keep in Touch” meeting with lunch, everyone welcome.
      Regards, David Morgan

      1. Just thought I would welcome you too Robert. I too have IBM. We are all here to help each other. Some determinate slower and some with more speed. It seems to depend on your falls and if you break something.
        Where do you live. We know IBMers around the UK and someone may be near you.
        David Morgan is a good start for you.
        As we say “Stay Upright”

    1. Hi Julie, I am not sure we are aware that ScleroDerma is Scleromyositis. I thought it’s an overlap. I have not seen it on other Myositis Support Groups Forum.If we are wrong then we need to look into putting it as a heading. Joy Walker

      1. Scleromyositis is Dermatomyositis (DM) or Polymyositis (PM) with an overlap of Scleroderma.

        I have that too Julie, only found out about the overlap when I had Antibody testing 2 years ago though I have had DM for 12 years.
        We are about all forms of Myositis .

    1. Hi Mary, actually its more to provide support for people who don’t use Facebook.
      Hope you will find it helpful .

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