Colin B's intro.

Hi all,

I am a 59 year old male living in london. I was formally diagnosed with Dermatomyositis in February 2017 having been admitted to The Royal London Hospital in a state of total collapse. After a two week stay under the consultant Dr Stephen Kelly and his superb team I was released back into the world to continue my slow but steady recovery. Since then they have managed to put the brakes on the inflammation but my plan to start an exercise program has been hampered by the PE's I developed on my lungs whilst laid low. Having said this my well being is much improved and I am slowly coming to terms with the long term implications of my disease. From what I have been told and read so far there are hardly two Myositis cases alike; all have commonalities but differ greatly in intensity and secondary symptoms.

It has been a traumatic but interesting journey for me so far with some dreadful times offset by a number of amusing episodes that I will share with you at a later date.

Kind regards, Colin.

3 Replies

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  • Hi Colin,

    Just want to say I'm sorry to hear you've been so ill, and welcome to our small and select group! A diagnosis of myositis is a baptism of fire, so hang on in there. Sounds as though you're getting really good care, though, which is encouraging to hear.

    I've found the support of other people from Myositis UK invaluable in getting through the experience - far more helpful in practical terms than most healthcare professionals. Also - the rarity of myositis can be isolating, so it was a huge relief to find a group of people who understood what was I was talking about.

    There is indeed a lot of variation in how the disease manifests itself; this seems to be common to all autoimmune diseases, and that can be very confusing. I'd say if you have a concern or query, throw it out to the forum (either here or on Facebook) - people are usually only too pleased to help.

    Wishing you all the best.

  • Welcome to the Myositis UK Community Forum Colin!

    If you are not already a member of Myositis UK here is a link. free membership gives the oportunity for you and a partner to attend the yearly conference on 2nd July in Oxford to hear Myositis experts speak, and meet others with Myositis; also to receive newsletters. myositis.org.uk/join.asp

    I host a Myositis UK Meetup group where we have an informal Afternoon Tea, free to Myositis UK members - there will be a London one later this year meetup.com/MyositisUK/

    If your on facebook you might be interested in the largest UK Myositis forum that I run, Myositis Forum UK facebook.com/groups/2432609...

    Exercise program for when you are able: myositis.org/storage/docume...

    Your nearest Myositis specialist clinic is Kings College Hospital led by Dr Patrick Gordon, who is one of the leading experts in the world.

    If you have any questions, I am happy I'm always happy to help.

    Regards,

    Jo

    (Admin/Myositis UK Trustee)

  • Thank you both for your kindness and good advice, hopefully I will be able to attend the AGM in July and the London meet you mentioned. Having a rough day today, supposed to be going on a mid week break this afternoon, i don't feel like it much but I will go, you just cannot surrender to this monster.

    Kind regards, Colin.

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