The ILF has a great concern for those children and young people with lymphoedema. It is a rare disease in this age group and can be so debilitating and difficult for children particularly as they approach puberty but also for their families who often think they are at fault for their child’s condition. It may well be that it is hereditary.
But for the child, fancy feeling different to your peers! During some earlier interviews we did, we spoke to one girl who other than going to school had no social contact with her peers not even going clothes shopping with them. She missed all the 18th parties because she couldn’t find shoes and clothes to fit her – how sad. The ILF, with ethical approval, is currently asking young people between the ages of 5 and 21 to complete a questionnaire at Survey Monkey so that there is actual measurement of their quality of life which will, hopefully, help their understanding and that of their parents and professionals.
If you have a child/young person with lymphoedema or know of someone who does please encourage them to take part in the survey which can be found at www.surveymonkey.co.uk/r/LYMPHOQOL
Find today’s ONE WORD CHALLENGE on Facebook: What is your greatest wish long-term for you with lymphoedema?