Lipoedema UK Surveys & Focus Group Reports

Lipoedema UK Big Survey 2014 Research Report

In 2014 250 women with Lipoedema took part in our survey about their experiences with Lipoedema. 

The results give a clear picture of what living with Lipoedema is like and reveal that along with the pain and discomfort caused by Lipoedema, many simple tasks that other people regard as straightforward become extremely challenging for people with Lipoedema.

Lipoedema UK’s Big Survey 2014 led to the development of the Royal College of GPs’ e-learning course, a half hour course, which enables GPs to recognise Lipoedema and diagnose patients

Our survey was created by Lipoedema UK, the Lymphoedema Department at St George’s Hospital, London, and the support of the Lymphoedema Support Network.

Thank you to everyone who shared their experiences and told us about their journey.

Click on the image below to access and download the full report.

 

Women in dire need denied surgery and treatments

 

A survey by charity Lipoedema UK highlights that a bleak future could await UK women with a debilitating condition called Lipoedema because life-changing treatments and surgery are not available on the NHS. Many risk their future and that of their family by taking out loans and spending savings to finance private treatments.

Preview results of 2019 Lipoedema UK survey report are available to download here.

Anne Henry, a lipoedema sufferer, presented her story about her problems getting a diagnosis and treatment to the Scottish Parliament Cross Party Group on Women’s Health. Read her story here.

 

Lipoedema UK Focus Group Reports

Women in Dire Need

Lipoedema UK has released a new set of four focus group reports under
the umbrella title “Women In Dire Need”, that reveal the significant and many
debilitating impacts faced by women living with Lipoedema.

Key findings are:
  • Lipoedema is an invisible, unrecognised condition
  • Discrimination and judgement are as debilitating as physical symptoms
    Poor mobility and financial health blight lives
  • Patients suffer poor mental health, including poor body image, self-
    esteem and self-confidence
  • Compression garments 1 can improve quality of life but patients struggle
    to get the right prescription
  • Surgery can improve quality of life and pain and have positive mental
    impacts, but is not without its challenges and can be financially crippling

One patient in focus group report number 4, Lipoedema and me: the damaging
impacts of lipoedema on everyday life, states: “I lost my career as I didn’t know
what was wrong with me and I couldn’t physically do the work anymore. So we
got into debt. We’re now in rented accommodation, with nothing to show for our
careers. Lots of older ladies are almost homeless – and their condition makes
them housebound.”

The focus group reports, conducted and written by Amy Fetzer MSc, expose the
in depth effects of this chronic disability on the lives of patients, by showcasing
their collective personal experiences and offering practical and sound advice to
both them and healthcare practitioners.

Lipoedema is a chronic fat disorder which causes permanent physical deformity
as a result of an abnormal build-up of painful fat cells in the legs, thighs and
buttocks, and often the arms, during periods of hormonal change, such as
puberty, pregnancy, or the menopause. Frequently misdiagnosed as obesity,
lipoedema is not caused by overeating or lack of exercise, and neither dieting nor
exercise can cure it. As well as being painful and potentially disabling, the
condition can take a huge toll on patients’ mental health and quality of life.

Key findings from the four reports identify the substantial and numerous
negative effects of lipoedema on the women’s everyday lives, including the
patients’ experiences with compression garments, the effects of liposuction
surgery (many of which are not positive) and the huge challenges faced by
women with late-stage lipoedema which can render them immobile.

Also captured within the reports, notably in Report 2 about Compression, are various
recommendations to assist healthcare professionals and patients with diagnosis
and treatment of the condition, advice that is vital to achieve early diagnosis and
much-needed treatment to help mitigate the effects of this life-long condition.

Patron of Lipoedema UK, Dr Kristiana Gordon, (MBBS, MRCP, CLT) and
Consultant in Dermatology and Lympho-vascular medicine at St George’s
Hospital, London, commented: “Yet another excellent series of articles from the
Lipoedema UK Team. They provide a candid and eye-opening insight into the
struggles experienced by patients with Lipoedema. All healthcare professionals
and patients will find them enlightening”.

Lipoedema UK Chair Sharie Fetzer states: “Lipoedema has a dramatic impact on
women’s lives – from restricting career choices to causing daily pain and mobility
problems.  Lack of treatments and awareness from the medical profession leads
to despair. Lives can be ruined. Much, much more must be done to ensure a
quicker diagnosis and to help women combat lipoedema, so that these patients
can have the brighter, normal future, that others take for granted.”

Please click on each report to see full report.