Millions of women of all ages suffer from a condition called Lipoedema. Sadly, the majority of them don’t know about it. Sharie Fetzer has decided to change that. Sharie is Chair of Lipoedema UK; a charity dedicated to raising awareness of Lipoedema to healthcare professionals, so all Lipoedema patients will receive an early diagnosis and quicker access to treatment.
Lipoedema or just fat legs?
Lipoedema (Lipedema in the USA) is a chronic condition that causes a woman’s body to accumulate fat below the waist, making hips, buttocks, and legs out of proportion with the upper body. Sometimes it affects arms too. No one knows the exact cause, but it usually only affects women and is believed to be genetic and hormonal.
“Most patient’s bodies look completely disproportionate, with a tiny upper body, set on top of a lower body several sizes larger. Buying everyday clothes is a nightmare and impossible for social occasions. Many women are forced to wear sandals all year as their calves and ankles are too wide for normal boots or wellingtons. Some women find buying a winter coat beyond their reach when their upper arms become disproportionately large.”
Lipoedema is still very little researched and is poorly understood. As a result, it is frequently misdiagnosed as obesity or lymphoedema (swelling due to the malfunction of the lymphatic system). When women are mistakenly told they are obese, it can cause great frustration and lead to eating disorders and despair.
According to the Lipoedema UK Big Survey 2014, 78% of women developed symptoms between the ages of 18 – 25 but only 7% received a diagnosis at that time as so few doctors have any knowledge about the condition. The fact that it usually takes over 30 years to achieve a diagnosis means that most women suffer great self-doubt and can lack support from family and friends leading to poor self-esteem and stress along with pain and discomfort as Lipoedema progresses. Sharie believes there are so many women with Lipoedema that everyone knows someone with (undiagnosed) Lipoedema.
“Women usually have to find the information themselves and educate their GP,” explains Sharie. “Conventional treatment for Lipoedema usually involves lymphatic drainage and compression garments. Non-cosmetic liposuction can be life changing, but this is costly and not currently available on the NHS or through private healthcare. A low-fat anti-inflammatory Lipoedema diet can be very beneficial too.”
Chair of Lipoedema UK, Sharie Fetzer has had Lipoedema since she was 15. But not diagnosed until she was 45. “I have had Lipoedema since I was 15. I have two daughters, three grandsons, and two granddaughters. My granddaughters are the reason behind my passion to bring about change. I don’t want them finding out
they’ve got Lipoedema when they’re 15 and facing no hope or treatment.”
Lipoedema UK and its mission
Lipoedema UK was established in 2012 by women with Lipoedema and St. George’s Hospital in London. Lipoedema UK takes pride in working with both patients and medical practitioners.
“It affects people’s lives hugely. Many Lipoedema sufferers end up hiding away from normal active life as many receive cruel comments about their shape. Sometimes you can barely get out of bed, your legs aching, covered in bruises and you experience an overwhelming sense of fatigue. People with Lipoedema spend years feeling isolated and alone as they struggle with a body that appears so different from their female friends and family members, compounded by failing to receive any explanation or support from the medical profession.”
Sharie and her team work very hard to spread awareness as increasing the number of diagnoses will lead to proper treatment paths available for everyone. She feels a huge sense of pride when people tell her how much Lipoedema UK has improved their lives and often has led to three generations of the same family receiving a diagnosis at the same time. Grandmother, mother, and granddaughter. Sadly, often too late for the grandmother, but hopefully in time to make a huge difference to the future health and happiness of the granddaughter.
How can we help?
“There is still a mountain to climb and we will only succeed when Lipoedema is on the curriculum of every medical school, leading to funding for diagnosis and treatment. Everybody is welcome to join us and together we can spread the knowledge and search for long-term solutions.”
Lipoedema UK is open to all as support of members and the public is essential to move things forward. There are many ways how to get involved including memberships, fundraising or donations.
For more information on how to receive a diagnosis and treatments, visit the Lipoedema UK website.