Patients / Parents
On behalf of the JDRG welcome to our Patients/Parents page. This page is very much for all those patients/families/friends living with juvenile dermatomyositis (JDM). We want to be able to give you as much information as possible. The amount of information wanted by each of you will differ, some people like to know as much as possible while others do not. Hopefully this site will accommodate both. As this site is for you we want to know what you would like so please go to the website feedback page and send us your ideas.
A number of issues arise regularly when talking to patients in clinic such as the difficulties with taking medication and the problems explaining to those around you about the condition. If you have any tips on how to cope with issues like these then please contact us and let us know so we can pass them on.
So please everyone contact us and engage in the debate about JDM. Let us build a UK wide JDM community that can help and support each other.
Click on the links below to find out more.
Future Events
The Myositis Support Group Annual General Meeting (AGM) and Mini Conference
This year’s AGM and mini-conference will be held at the Holiday Inn Eastleigh, near Southampton on Sunday 4th July, 2010. It will be a similar format as last year which proved to be very successful. It will include break out session after lunch for open discussions for each of the illnesses (IBM, PM/DM and JDM) to allow members to directly talk with the specialist(s). This gives more opportunity for specific questions and for meeting others with a similar disease type. The meeting will be more informal with less emphasis on research updates.
The conference is free to members but a charge of £30 is made to non members (membership is free). If any families would like to come for just the afternoon session which is a break out session for open discussions for each of the illnesses (IBM, PM/DM and JDM) to allow members to directly talk with the specialist(s) then they can do so free of charge even if they are not members. This would be a great opportunity for parents to meet each other and they are welcome to bring their child as well.
If anyone would like to attend please email Irene Oakley- irene@myositis.org.uk
Prelimary Programme
10.00 - 10.30 Meet new and old friends with a cup of tea or coffee
10.30 - 11.00 AGM
11.00 - 12.30 Morning Session
12.30 - 1.55 Lunch
2.00 - 3.30 Afternoon Session
3.30 - 4.00 Tea Coffee Break
4.00 - 4.30 Summary and Close
Fairy Masked Ball 2010After the success of the 2009 Fairy Party the organisers are pleased to announce the 2010 Fairy Masked Ball. Get your tickets quickly as this is a popular event.
