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
Charlotte
Charlotte.pdf
Elise
Elise.pdf
Isabel
Isabel.pdf
Rose
Rose.pdf
Niamh
Niamh.pdf
Emily
Emily.pdf
For more information please refer to
Frequently Asked Questions
.
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.
Roll out the Barrel
On the 2nd of June 2012 myself (Joanne), my husband
(Colin) and a group of approx 20 wonderful friends and family pushed a whisky
barrel across Scotland from Ullapool to Dingwall. We left Ullapool at 1pm on
the sat and walked through the night (taking short breaks every 5/6miles)
and arrived in Dingwall at 7:10am on the Sunday morning having walked
approx 46 miles. It was an amazing, breath taking adventure with a lot of
laughs and blisters along the way. We arranged this event in order to
raise money for research into JDM a condition which both our twin
daughters, Hannah and Katie suffer from. Our grand total came to
an staggering £11,425.13 so well worth every step.
The JDRG wishes to send out a huge THANK YOU to everybody involved with Roll out the Barrel and for sharing this experience.
BUPA 10K run 2012
Laura Beard, who worked within the JDRG, will be running 10K with her sister in May to raise money for the PDRF, which supports the research into JDM.
If you would like to donate money, please visit Laura and Kate's fundraising page .
Thank you and Good Luck!
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
.
A big thank you to both Stephen and Harsha!
* 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