Letter from the Chair of Lipoedema UK Sharie Fetzer

Together we can beat Lipoedema

Most people with Lipoedema spend years feeling isolated and alone, as they struggle with a body that appears so different from their female friends,  other familymembers and in the media.

Even though the tombs of Egypt contain images of a queen with Lipoedema, it’s hard to find photos of women from previous generations, because women with Lipoedema take great care to fade into the background and avoid their legs being on show.

Yet, we know that millions of women throughout the ages have suffered the indignities of Lipoedema and battled with a strange debilitating fat that the medical profession has so far ignored.

But, the tide is changing and numbers are power. Since the launch of Lipoedema UK in 2012, women with Lipoedema, who have previously been silent, almost invisible, are taking control, realising that if no-one else is going to change things – it’s up to us to make it happen.

Lipoedema UK’s Big Survey was the first collaboration between LIpoedema patients and medical advisors and paved the way for our partnership with the Royal College of General Practitioners and development of the first learning course on Lipoedema.

Stories abound of how Lipoedema UK’s GP Information Pack has converted a GPs from an unhelpful dismissive foe to a friendly supportive ally. As one of our members put it, she and her GP are now ‘singing from the same hymn-sheet’

The 2017 launch of the UK Best Practice Guidelines, The Management of Lipoedema is the result of strong team work between medical experts, Lipoedema UK and patients. For the first time we have a blue-print for UK treatment pathways and complete summary of all that is known about Lipoedema to date.

In 2018 Lipoedema has gained international recognition with it’s own ICD Code and will feature in several professional conferences including the International Lymphoedema Framework in Rotterdam in June.

My heartfelt gratitude goes to the skilled and dedicated, group of Lymphoedema specialists, nurses, surgeons, and healthcare professionals, who give up their own time to support Lipoedema UK with special thanks to our Patrons Dr Kristiana Gordon and Professor Peter Mortimer, Lipoedema genetic researchers, Dr Pia Ostegaard and Glen Brice and our team of Nurse Consultants, Denise Hardy, Kris Jones and Mary Warrilow.

But, there is still a mountain to climb, we will only succeed when Lipoedema is on the curriculum of every medical school, leading to funding for diagnosis and treatment.

If you, or someone you care about has Lipoedema, we welcome you join us, so together we can change attitudes, spread knowledge and search for long term solutions so women can look forward to a Lipoedema free future.

Lipoedema UK are a small team, operating on very limited resources, membership is open to all and your support is essential to move things forward.

Sharie Fetzer



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