I was born in Johannesburg, South Africa, the middle child of three siblings. As I approached puberty, I noticed I had much heavier legs than my friends. I had been teased relentlessly at school about my ‘elephant’s legs’, and I found this very hurtful and, as a result, I didn’t mix very well with others, tending to stay at home on my own a lot. At the age of 11, I was hospitalised for a week of investigation, where I was placed on a strict, calorie-controlled diet and my legs were measured and bandaged tightly. At the end of the week, my legs remained the same size and I had hardly lost any weight. The conclusion they came to was that I had a genetic disorder called lymphodema.
My father, my hero, passed away when I was 15, so we emigrated back to Zimbabwe to be closer to my mother’s family. I was very self-conscious about my looks and tended to stay at home a lot rather than socialise with others. I got married at the age of 21 and had my first child 18 months later, followed by three other children in the space of six years. With each pregnancy my legs seemed to get worse and worse, feeling very painful to touch as well as heavy to lift.
We left Zimbabwe in 1987 and emigrated to Port Elizabeth in South Africa. Starting with new doctors, I asked my doctor if he could investigate my condition further, so he referred me to a vascular specialist who told me I had lymphodema. I was also told that nothing could be done about it, but I was to try to lose weight and keep active. If only they knew how difficult it was to keep active and just how much pain I was in daily! I felt as if no one was listening to me and that I was the only one on the planet who looked like this. I felt desperately alone and went into my first severe depression.
I got through my thirties and forties and I still had no solution to my problem, despite trying every diet known to man, and my legs continued to grow in size and were, by this stage, very painful. As I was the breadwinner of the family, I found life a constant struggle and even contemplated suicide. Luckily for me, God intervened, bringing someone across my path to show me that life was worth living after all.
We moved to the UK in 2003, and I came ahead of my family to get established with a job and home. Once again, I asked the doctors if anything could be done, only to be told to try to lose weight and stay active.
I have now reached the age of 60, having gone through menopause with ever-increasing legs and living constantly on high doses of painkillers around the clock, still on antidepressants and high doses of water tablets, all to no avail. However, my best friend, who has watched my struggle for over 40 years, saw a medical programme on television in which a woman with a similar body shape to me was examined by a doctor and told that she had Lipoedema, not lymphodema. I downloaded the programme and watched it, crying with relief that someone else out there knew exactly what I had been going through. I now no longer felt like an alien from another planet, and I could finally stop feeling guilty, realising that this is not my fault, that no amount of diet or exercise could rid me of this awful condition.
The next question was, where do I go from here? I continue praying that the Lord will find me a solution to the constant struggle I face each day, because even walking short distances is becoming a huge issue. I go to aqua aerobics and exercise classes three times a week for some movement, but I live in constant pain.
A specialist at St George’s Hospital in London officially diagnosed me as having Lipoedema with Stage 4 lymphodema. I was told the NHS do not consider patients for liposuction, and that I would have to seek a private specialist and fund this myself, which is impossible for me financially. I have volunteered to be a part of a genetics research programme. The genetics consultant told me this condition is usually passed down through the genes to females and can sometimes miss a generation, which is what happened in my case (my grandmother on my father’s side had the same huge legs as me).
My mission now is for the remaining time I have left here on this earth to try and raise awareness of Lipoedema so that it becomes a household name. There are over 10,000 diagnosed women in Britain alone and many more who aren’t aware of their condition being shunned by society and the medical profession, told to go away and lose weight or worse still labelled as morbidly obese. It is also the prayer of my heart that the NHS will do something to help these poor souls out of their pain by offering liposuction and compression garments. If we were animals carrying this abnormal weight around, I am quite sure that something would be done to put us out of our misery.
