Lipoedema - Why Don't They Listen? By Gaynor Leech, LWO Community Founder and Patient Advocate

"Early May, when Mary and I were discussing the next article for the June Newsletter, she reminded me that June was Lipoedema Awareness Month and she suggested I might write an article on Lipoedema because some LWO Community members would have Lipo-Lymphoedema. 

Oh, dear somewhat out of my depth here.  I remember in the early days of L-W-O that one member was very cross with me for concentrating solely on Lymphoedema and not including Lipoedema.  In fairness to me, in those early days I was finding it difficult to understand Lymphoedema let alone adding information on Lipoedema

However, I was aware of UK charities - Lipoedema UK and Talk Lipoedema and felt they were better placed than I was to cover this little understood disorder, which is said to be "rare", with few health care professionals (HCP’s) having knowledge of it. Yet, when I scan the internet, it is thought that 10% of women have Lipoedema; so it is not rare at all! I am always very happy to signpost those living with the condition to both of these excellent and supportive patient organisations.

Those living with Lipoedema or Lipo-lymphoedema are constantly told to lose weight and while we all agree that weight control is important, dieting does not work in the areas affected by Lipoedema fat., These conditions are simply not a direct result of obesity and are genetic, usually affecting females.  Lipoedema runs in families and therefore a knowledge of family history is useful, for example a grandmother may have had the condition but then it could skip a generation to a granddaughter but it is not necessarily a condition the mother would have. 

There needs to better understanding of Lipoedema and Lymphoedema, with much more research carried out.  Conservative treatments and non-cosmetic liposuction for Lipoedema should be made available on the NHS, it is only fair. Diagnosis should not be difficult, our members report that it took "ages to get the right diagnosis".

The worst part is when visiting a health-care professional who knows nothing about Lipoedema or Lymphoedema, is when you have taken in information for them to read, you have explained your condition, they thank you, you get up to leave and their parting shot is “It would help if you could lose some weight”. Tears, expletives, and frustration…

” Why do they not listen?”
I would like to thank Jo Mander for talking to me via Zoom and telling me her story and reviewing this article.  Jo has been a member of L-W-O Community since September 2017.  Patient stories are so important, and you can read Jo’s story here."