After being diagnosed with Lipoedema in 2011 Suzanne Evans set up Lipoedema UK with the support of Professor Mortimer and his team at St George’s hospital. This is her story.
In 1979 I was 14 years old and the dreadfully sexist single, Nice Legs, Shame About Her Face by The Monks was at no 19 in the charts.
I had a Saturday job working on my aunt’s market stall, and noticed three boys leaning over the balcony above the main hall looking at me and laughing among themselves. Suddenly, they caught my eye, and all three, loudly and in unison, screamed down at me: “Nice face, shame about the legs!”
This horrible moment, combined with my own shame and hatred of my horrible, fat, ‘tree trunk’ legs set me on a path of madcap diet and exercise regimes. If I was too fat, clearly I had to diet and then I would get thin, right?
Well no. My legs just got inexplicably bigger and bigger and despite my still slim waist I eventually hit a BMI of 30 which made me officially ‘obese.’ In spite of all the dieting, exercising, massaging and fat-pummelling, the only thing that ever shrunk was my self-esteem, and all I got for my efforts was an eating disorder.
It was 32 years after the market stall humiliation that I discovered my fat legs are not in fact my fault. I had Lipoedema, a disfiguring, disabling, genetic disease that lays down heavy, painful layers of fat on the legs and upper arms during periods of hormonal change, regardless of what you eat or how much or little exercise you do. It made sense; I’d been quite a skinny child, the legs first ballooned at puberty.
I was diagnosed only by chance, while being treated for osteoarthritis at St George’s hospital in South West London. The consultant who examined me took one look at my unusually big ankles and referred me to Lymphoedema/Lipoedema specialist Professor Peter Mortimer and his team. I was seen by Nurse Consultant Sandy Ellis, who diagnosed me within seconds of my walking in through the door. It made sense of so much, not least the osteoarthritis which is common in Lipodema patients.
The diagnosis itself was both liberating and depressing. The first thing I did after the appointment was deliver the bad news to my daughter and my mother, to tell them they had it too. For us, Lipoedema is a ‘family disease.’
My daughter burst into tears. She too hated her legs and like me had been hoping against hope she could do something, anything, about them. While knowing the fat wasn’t our fault meant we could stop blaming ourselves, knowing we were stuck with it was awful.
I felt I had no option but to take action and set up an organisation that would spread the news about this dreadful disease about which even doctors know so little, let alone the general public. There is no cure, no consensus on treatment or cause, and very little help available on the NHS. Apart from being fitted for compression tights, which are said to stop the disease progressing, and being told to avoid red wine and salt, there is little the NHS can really do right now. But what we can do is make sure doctors are informed and know what Lipoedema is, and how it differs from lymphoedema, so they can correctly identify sufferers rather than just dismiss us as ‘fat,’ hand out completely the wrong advice, and compound our suffering.
Needless to say, there is a desperate need for more research into viable treatments and much more support and information needs to be given to sufferers. This is the aim of Lipoedema UK, the Charitable Association I have set up with my mother, my daughter and a friend who also has Lipoedema. Ultimately, we hope to open a dedicated support and treatment centre. Meanwhile, our job is to inform, raise awareness, and give what practical advice we can to halt the pain and progression of this disease.
Professor Peter Mortimer and his team at St George’s were fantastic, fully supporting the charity, agreeing to become patrons and nurse consultants, securing financial backing from sponsors and even persuading St George’s hospital to design and host our initial website.
While no one knows quite how many women suffer from Lipoedema, I’ve seen estimates suggesting it could be as many as one in ten. If it isn’t recognised and treated earlier, that’s one in ten women growing up like I did, riddled with shame, ruining their health by unnecessary, dangerous dieting and exercise regimes, and facing disability in middle age. If we can help put a stop to that, we will have achieved our aim.