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Meetings // AGM & Conference

Dermatomyositis & Polymyositis

Trustee, Jo Goode, sat in on the adult Dermatomyositis and Polymyositis session room.

She writes:- "Professor Bob Cooper and Dr Zoe Betteridge were our main speakers for the DM/PM break out room and did an amazing job informing everyone on many aspects of Myositis. We had a number of lively, funny, informative and productive debates with them. Bob started the morning session with an overview of Myositis. Zoe gave her research update.

Then Aleksandra Pietrusz gave an exercise demonstration for exercises in a chair/wheelchair, followed by questions and exchange of ideas from our members. A talk from ReMap followed; a charity mainly run by volunteers that will come up with solutions to help disabled people, this could be designing a ball thrower to play fetch for a dog, to building a cover over a bike for a small girl, who has to be protected from the sun. I and the group were surprised (including Bob!) and taken back by some of the designs shown on the slides. Then Specialist Rheumatology Nurses, Paula and Julie from Portsmouth Hospital, spoke about their work designing with the help of the Myositis Support Group a "Personalised Care Plan" with the idea that a person with Myositis would be given a folder that would help manage their health, from appointments, listing medication, to collating test results. I could see that this could be an invaluable tool (that was suggested, could also be turned into an app) for not only a newly diagnosed person, but also just managing the complicated health conditions of Myositis patients. We concluded with a question and answer session with our members picking Zoe and Bob's brains with a truly wide range of Myositis questions!

Inclusion Body Myositis

Chairman, Les Oakley sat in on the IBM room.

He writes:- "I sat in with the Inclusion Body Myositis members and Dr Michael Rose talked about the "Standard Care Project in IBM with Member Feedback" that Tony Hindle had also given much time to. This produced some lively discussion and some in the room felt there was not enough patient involvement and decision making with perhaps too much ticking boxes involved. Whether this is the case remains to be seen but it does not alter the fact that this project, because of the rarity of IBM, involves other countries in Europe and at last IBM is a topic that only a few years ago we had difficulty in getting speakers to talk about an illness where nothing was really happening. Thankfully these times have moved on and Dr Matt Parton gave an overview about diagnosis and treatment etc., and Professor Mike Hanna about research update in IBM at Queen's Square in London.The big issue now for him, and I would like to think for us as a charity, is how the money can be raised to move this vital research on.

ReMap representatives gave a talk about aids and equipment that may be helpful in coping with day to day living as well as bringing to everyone's attention that they could also, if necessary, have bespoke items made. Physiotherapist, Aleksandra Pietrusz, talked about exercise and its benefits."

Juvenile Dermatomyositis

Trustees, Paula Jordan and Nichola Coleman, sat in on the JDM room.

Paula writes:- "Although small in numbers we had a great session. The JDM room had a real mix of people, from myself who had JDM as a child, to parents of JDM present and parents of JDM past. Unfortunately, on the day our numbers were quite low but this allowed us to sit around a table and introduce ourselves to each other. The children were treated to a Teddy-Bo drawing master-class with Simon Chadwick, bowling on the wii, games and an outdoors bouncy castle – don't forget the sunscreen!

Our first speaker of the day was Jonathan Griffin a Podiatry PhD student at University of East London and working with Dr Lucy Wedderburn at Great Ormond Street Hospital. Johnathon spoke last year about his proposed project studying children's feet in JDM to establish whether their walking is compromised and whether a podiatry aid could help. They currently have no idea whether the walking problems in JDM are specific to the condition but it is noted that some children do tend to walk on their toes. This is thought to be because the tendons can shrink in damaged calf muscle but what exactly is going on in the foot and whether foot muscles are affected are unknown. Jonathan reported that his study is now ready to examine JDM children at GOSH, unfortunately the cost of the study is only allowing children being seen at GOSH to take part. There was a short question and answer session which lead onto a general discussion amongst ourselves prior to lunch.

In the afternoon Professor Lucy Wedderburn and Dr Clarissa Pilkington from GOSH (and JDRG) joined us and we had an informal open table talk on various aspects of the disease, treatments, exercise, calcinosis, relapse, networking with other specialist centres, JDM Research Group website and future research. A parent said in conversation, "Sitting with both doctors, experts on JDM, and directly being able to ask any question is a unique opportunity in addition to sitting next to fellow parents going through the same thing which in itself is comforting."

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