Patients & Parents
On behalf of the JDRG welcome to our Patients and 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.
Personal experiences
A few of the patients and parents that are in the cohort study have kindly given their experiences of when they / their child was diagnosed with JDM. To view their stories, click on their names below:
Harry
Harry.pdf
Elise
Elise.pdf
Isabel
Isabel.pdf
Rose
Rose.pdf
Emily
Emily.pdf
So please everyone contact us and engage in the debate about JDM. Please email info@jdrg.org.uk if you would like any information added to this page. Let us build a UK wide JDM community that can help and support each other.
Future Events
London Marathon 2011
Stephen is running the London Marathon for the Paediatric Rheumatology Discretionary Fund (PRDF) after a friend's daughter, Callie, was diagnosed with JDM in September 2009. The PRDF supports the research of the paediatric and adolescent rheumatology clinical teams at Great Ormond Street Hospital and UCL Hospital, and research teams at UCL Institute of Child Health and the Windeyer Institute.
Please visit Stephen's 2011 London Marathon Page if you would like to donate.
Good luck Moley!
Dr Harsha Gunawardena, a consultant Rheumatologist who has also completed research for the JDRG will be running the London Marathon this April. Harsha will be raising money for the
Myositis Support Group
, a charity that supports the JDRG.
If you would like to donate money, please visit
Harsha's 2011 London Marathon Page
.
Thank you!
* The Myositis Support Group Conference and AGM *
The 2011 MSG conference will be held on Sunday 10th of July 2011 at the
Marriott Forest of Arden Hotel
in Birmingham, West Midlands. There will be a break out session on JDM. Please visit the
MSG website
or contact Irene the Group Co-ordinator on
irene@myositis.org.uk