This article is taken from the Winter 2012 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members.
For details of how to become a member, click here.
Take part in a new survey –
‘What it is like to live with Lipoedema’
Lipoedema UK launches a new online survey
If you have been diagnosed with lipoedema, and live in the UK, Lipoedema UK would love you to take part in their new online survey.
For the first time, there is an opportunity for you to provide your feedback on how the condition affects you and your life.
The survey is the idea of Sharie Fetzer, a lipoedema patient herself. Sharie wanted to find a way of highlighting the difficulties that lipoedema sufferers have in getting a correct diagnosis, and the issues that surround living with the condition.
The survey was developed after consultation with other lipoedema sufferers, the Lymphoedema Support Network and members of the medical profession. It is now available online. We need as many people as possible to fill in the questionnaire so that the results will have the greatest impact.
It is hoped that by gathering this type of information about lipoedema, it can be used to help raise awareness in the medical profession. It may even help to prompt more research into treatment.
All information will be treated in strictest confidence and not passed on to third parties. If you provide your email address, you can receive your own copy of the results and have the opportunity to take part in further surveys.
We all know there is a lot to do to improve the way lipoedema is diagnosed, and to improve the help that patients receive. This survey is a way of getting your voice heard.
To take part, please email firstname.lastname@example.org to get a personalised link to the survey.