One Family’s Battle With Lipoedema
Sadly Lipoedema can run in families, meaning that a lot of the time many women with the same genetics can be affected. Catherine Berry and her daughter Harriet have shared their battle with Lipoedema below, as well as Catherine’s sister Rachel explaining her personal account of what it is like to be part of a family with members who have Lipoedema, even as a non-sufferer. Take a look at their stories below.
Catherine Berry Aged 58
It must have been at 11 years old that I had an inkling that all was not right with my legs. It was sports day at Primary School and I was wearing some new shorts, but my legs looked different from the skinny tanned shanks of my fellows and my thighs rubbed together as I ran. Unsurprisingly, no prizes were won by me that day and PE became a subject to dread at Secondary School as I became increasingly self-conscious and running around seemed like an effort. At that time, looking back, I thought that the reason that running was so tiring must be a fault in me and that I was not putting in enough effort. In time I learned that ‘not bothering’ was easier than trying to keep up.
My teens and 20s were punctuated by bouts of dieting; the cabbage soup diet, the grapefruit diet, the Atkins Diet, the F plan diet, usually alongside my Mum who hid her legs away beneath voluminous kaftans and long skirts. We rarely saw Mum’s legs, she didn’t swim with us or expose them in any way and I think my sister and I thought that she was just overweight. As time went on, Mum’s legs would grow distressingly enormous on a tiny bony top half and it was heart breaking to remember her and our distress and bewilderment as to why they grew out of control, until walking became a huge effort. ‘She must be a secret eater’ my sister and I decided. My mum’s medical notes mentioned lipo-lymphoedema, but this was evidently not explained to her, neither mentioned to us or her family and she died not realising that her grossly swollen legs were due to a medical condition.
Pregnancy hastened my leg growth. ‘I’m just too ill-disciplined to lose my baby weight’, I would tell myself. Medical professionals were faintly condemnatory about my gradually increasing weight. Like my mother before me I wore dark clothes to try to disguise my leg size. My children would tease me about how everything in my wardrobe was blue or black! I began to overeat because nothing I did seemed to make any difference, and the whole family began to get fatter. Then came breast cancer and a wakeup call to improve health. We changed our eating habits and I joined a gym. Throughout chemotherapy and radiotherapy I swam and exercised when I had the energy. We all lost weight through a healthier lifestyle but my legs remained stubbornly large.
An incident in an Oncologist’s waiting room was the starting point for my discovery of Lipoedema, and I wonder if I would still be living in ignorance and self-hatred and perhaps not be able to walk now, were it not for that edition of Woman’s Own amongst the pile of magazines there. An article about a group called ‘Lipoedema Ladies’ caught my eye and I only had read the first paragraph when I was called in to see the consultant, and then promptly forgot about that article for a couple of years until menopause sent my Lipoedema completely out of control. It seemed as if my limbs grew overnight and were so heavy I struggled to climb stairs. My Mum had died by then and my sister and I had a trip to her country of birth-Switzerland- with my Dad, in her memory. The pictures of that trip make me sad; my legs were so big. My ankles started swelling on a regular basis and the future looked grim. And then I remembered something about the ‘Lipoedema Ladies’ article that had caught my attention all that time ago and began to do some research. It was a Eureka moment. There seemed to be very little information on the internet, but there was an organisation called Lipoedema UK and they were running a Conference in 5 days time! Entering the conference hall on my own was really hard, but I could see gorgeous women of all ages and sizes, and all with limbs like mine! At last, an explanation for a lifetime of self-doubt. I spent most of the day crying, there was so much to take in from a position of knowing nothing. Representatives from the Hanse Clinic were there talking about Tumescent Liposuction for Lipoedema, and I knew straight away that I wanted it. Mum had left me a sum of money, and this would be her Leg-acy to me!
Now I started to hit difficulties, the Conference had resulted in a rush of women booking surgeries at Hanse and the clinic would not even respond to my enquiry except to say that there was a 2 year waiting list. I felt as if I had come to a dead end. There was so little information about Lipoedema at that time and I thought that the Hanse Clinic was the only place in Europe doing this sort of surgery and it was unattainable.
Here is where another newspaper article came to the rescue. Six University friends met at an Air B&B each year. They had watched my ballooning limbs over the course of 35 years (and had probably drawn their own conclusions as to the cause) and now at last I could explain to them the reason for their size. I spent a weekend weeping over the fact that having found out about Lipoedema and how to deal with it, the surg
ery itself was not imminently available: I wanted the surgery NOW! A week later a letter containing a newspaper article plopped through my door, from my lovely friend Gill, who didn’t usually read the Mail, but was flicking through it at her Dad’s house. The article mentioned the name of a surgeon based in Hull, Vasu Karri at the Karri Clinic. I tracked him down and made an appointment.
I have had three lots of tumescent liposuction and it has changed my life. My legs are not beautiful but they work very well indeed. I can run up the stairs, walk for miles and love my Scottish Dancing (when Covid restrictions are not in place of course)! I maintain a healthy lifestyle and try to avoid grains and sugar as much as possible. My beautiful daughter also has this horrible disease and I hope that our stories will help educate the Medical profession and lead to changes in the treatments offered by the NHS.
Harriet Berry Aged 26
Have you any idea how it feels for your body to be out of your control? That no matter what you do, it won’t change. It just seems to go against science.
As a child, I always knew my legs were different. Even without lipoedema, I was very overweight, on the 99thcentile for weight. I remember in a PE lesson another girl asked me why I didn’t have any knees. Realising that other people saw my body differently made me even more self-conscious. I distinctly remember being at a swimming pool when I was about 8 and saying that I wanted liposuction when I grew up. I never thought I actually would.
Fast forward to my late teens and a combination of circumstances and a need to try and seize control of my life, I developed anorexia. Initially, I lost weight slowly and healthily, but it was never enough, and things spiralled out of control. Interestingly, despite losing nearly half my body weight, my legs changed very little. Over the last decade, I have continued to struggle with an eating disorder. My weight has gone up and down, but my legs kept getting bigger. Body dysmorphia usually goes hand in hand with anorexia. Whenever I expressed distress about my legs, I was told it was all in my head and was simply bad body-image.
Then, in 2016, my mum was diagnosed with lipoedema. I was sure I also had it. Again, everyone insisted it was just body dysmorphia, but the symptoms were there. Bruising, joint pain and swelling are not normal for an otherwise healthy 22-year-old.
Over the next year or two, both my legs and upper arms seemed to expand rapidly. In desperation, I ended up booking and appointment with Mr Vasu Karri and in the summer of 2018, I was diagnosed with Type IV stage I/II. The diagnosis was a huge relief but also brought out the fear for what could be. Having seen the progression of both my mum and grannie, it terrified me and it still does. Lipoedema progression is variable and unpredictable which brings a whole new level of uncertainty and fear.
I went on to have liposuction later that year. I was disappointed when I woke up, I felt that very little had been taken. Being early-stage, liposuction was done more as a preventative measure against the lipoedema progressing rather than to treat. However, the remaining pockets of lipoedema tissue have continued to grow, and I think it is likely I will need further surgery.
Surgery is a huge financial outlay. I was fortunate, thanks to my family, to have enough savings to pay for one procedure. Most people my age do not and therefore are unable to access treatment. They will then continue to progress and go on to develop complications as a result.
I am a newly qualified doctor and during my time at medical school, never once did I hear about lipoedema. With mum being diagnosed, I suddenly knew a huge amount about it. I made a conscious effort to educate both other medical students and other doctors and healthcare professionals. Usually, it was met with interest and a wish to learn more. However, one interaction shocked me. I was on placement in an outpatient clinic. The doctor I was with was a professor and an expert in his field. We were having a discussion about what causes weight gain. His general opinion was that weight gain happens by simply eating too much and moving too little. I then mentioned lipoedema:
‘Do you mean lymphoedema?’
‘And what’s that?’
I launched into my well-practiced, clear and concise spiel. When I finished, his response:
‘Who the f*ck told you that load of b*llocks?’
I was both shaken and angry. I explained about my mum having it and being treated for it. He refused to listen and steered the conversation in a different direction. Considering the General Medical Council (GMC) requires doctors of all levels the keep up to date with skills and knowledge (GMC. Good Medical Practice: Domain 1) it angered me that he was being so dismissive.
Lipoedema has had the biggest impact on me mentally rather than physically. My self-esteem has always been rock-bottom. The perception of what my body looks like is already incredibly distorted; add a condition that causes weight gain in so-called “problem areas” and it throws another giant spanner in the works. So much eating disorder treatment is based on weight criteria. You have to be “thin enough” to get the help. But with lipoedema your weight is affected, so even though your thoughts and behaviours are debilitating, you aren’t seen as needing the help you desperately need. I was once accused by a dietician of lying about how much I was eating. She said my weight would have been much lower if that was really the case. Her conclusion was that I must have been dissociating and binging. When I look in the mirror or at photos, something I avoid at all costs, I want to cry. I struggle to look at any sort of reflection, or even my own shadow. What I see disgusts me and knowing there is nothing I can do to change it makes it feel even more out of control.
One of the worst things about lipoedema is that no one ever believes you. People are dismissive and think you’re making excuses for why you are, the way you are. We need more awareness, both withing the medical profession and across the general population. I hope that in time, lipoedema will become more widely recognised and treatment will be available to all, rather than those privileged enough to be able to afford it.
I have a vivid memory of being about five and rolling around laughing on the sitting room floor with my young mother whilst she did her daily exercises and suddenly being revolted to see her thighs – big, grey and looking to me like lumpy, dirty pastry. I vowed then I would never have legs like that.
I was lucky – I did not develop big legs, but it was luck. My mum went on to die at the age of 85 with legs so out of proportion with the rest of her that she could barely lift them, hating her body and with no idea why she was so obese. My sister too ballooned in her 40s after having children, but swore to me in regular desperate phone calls that she was eating less than I was. None of us had ever heard of Lipoedema.
As for me, that snatched view of mum’s legs marked me. Puberty and puppy fat sent me into dieting, which ended up with my developing an eating disorder in my late teens. I remember my mother begging me to eat as hospitalisation became likely and me screaming at her that I would only gain weight on condition that she would lose it.
She tried but failed, as she tried so many times during her life, to regain the tiny figure that had so captivated my father, at the age of 19. Her weight only increased. I gained enough weight to keep myself out of hospital and spent the next few years on a strict low calorie diet and running several miles a day, making quite certain I would not look like mum. Even today I keep a tight control of what I eat and how I exercise, as much from fear as self-care.
My eyes still fill up when I think about my sister Catherine in the years when she rang me in despair asking me to tell her what I had eaten that day and told me about the pitifully small amount that she had eaten. I did not believe her. No one could survive healthily on that. She was clearly either lying or conning herself about what she was eating like Mum, I told myself, torn between disbelief and love for my sister.
Dad and I, who are similarly strongly-built mountain lovers agreed their obesity was a mystery, but they clearly needed to eat less.
Then the day came in 2016 when Catherine emailed me a picture without comment. It was a rear view of a woman slim on the top and with enormous rolls of flesh cascading from her thighs, and a label Stage 4 Lipoedema. The effect was like a bomb exploding in my mind. I felt I was looking at Mum and also Catherine. I put my head on the desk and wept for their suffering, my lack of belief in them and that Mum had died without knowing that it was not her, it was a genetic condition. I also wept in fear that I might also become like them.
That was a landmark moment in our family. Catherine was galvanised and found out that surgery was probably the only way to avoid disability. As a writer on health, I was astonished that I had not heard of the condition and neither had most of the medics I talked to. When Catherine identified a surgeon, I did my best to help her by making my own checks but there was so little information. Her GP dismissed the condition. I feared my sister would be the victim of some backstreet operation and suffer serious damage.
However Catherine was clear with me, as far as she was concerned it was the operation or life in a wheelchair. Put like that there was no question in my mind that she was right.
She went on to have two liposuction operations and her life has been transformed, even though she admits “I do not have the perfect body”. She dances, walks long distances, is prepared to be photographed in a swimsuit and exudes self-confidence. I am hugely, hugely proud and very grateful that Catherine has been saved the fate suffered by our mother.
Catherine’s daughter (my niece) Harriet, was also diagnosed with Lipoedema by Catherine’s surgeon, having developed eating disorders in her late teens and had surgery two years ago, before her condition became advanced, saving her the experience of her mother. In retrospect, we also think that our maternal grandmother in Switzerland also had the condition, but not as badly as Catherine and Mum.
Living in a family with Lipoedema has left its scars on me, even though I have the great fortune not to have it yet. Night and morning I look at myself in a full length mirror, scrutinising it for signs of any increase in size in my legs. My husband gets frustrated at the regularity with which I ask for reassurance about my thighs.
I’m not sure I’ll ever lose the fear of waking with ‘big legs’. We know so little about Lipoedema and even medical professionals are ignorant and even resistant to it. Research needs to be done to understand the condition, doctors need to be educated to diagnose it and the NHS needs to provide surgery to give people the chance to live a healthy life, rather than sentencing them to a life of useless dieting.