Glynis’ Story

I was born in Johannesburg South Africa the middle child of three siblings, an older brother and younger sister. When I was six we moved to Bulawayo in Rhodesia (now Zimbabwe) and stayed there until the age of nine when we were forced to move again to Kitwe in Zambia for our dads work . As I approached puberty I noticed I had much heavier legs than my friends etc and had relentlessly been teased at school having insults hurled at me daily about my legs looking like elephants legs. I found this very hurtful and as a result I didn’t mix very well with others, I tended to stay at home on my own a lot. At the age of eleven I was hospitalised for a week of investigation where I was  placed on a strict calorie controlled diet and my legs were measured & bandaged tightly but 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 fifteen so we emigrated back to Zimbabwe to be closer to my mothers 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 twenty one and had my first child eighteen 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 like no one was listening to me and I was the only one on the planet that 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, my legs continued to grow in size and were by this stage  very painful. As I was the breadwinner of the family due to my husband’s epilepsy and stroke, I found life a constant struggle and even contemplated suicide for it all to end. Luckily for me God intervened and he brought someone across my path to show me that life was worth living for after all. 

We moved to the UK in 2003, I came ahead of my family to get established with a job and home and once again 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 sixty, having gone through menopause with ever increasing legs and living  constantly on high doses of pain killers around the clock, still on anti-depressants and high doses of water tablets, all to no avail.

Recently my best friend, who has watched my struggle for over forty years saw a medical program on television where this woman who looked similar in body shape to me was being examined by a doctor and told that she had Lipedema and NOT Lymphodema.

I downloaded the program 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.

I wrote to the same medical program that she was on and asked the producers if they could tell me more about this condition and they invited me onto the program for a diagnosis. I’m delighted to say that I went for blood tests, followed by an Eco cardio gram of the heart to rule out that the swollen legs were not because of my heart not doing it’s job properly and then received an official diagnosis. I had been misdiagnosed with Lymphodema for all these years when in fact my condition is called “Lipoedema” which is  an adipose fat disorder that traps sufferers like me in a “fat suit” made up of water and toxins that should get flushed from the body by the lymphatic system but doesn’t. Essentially, my body is saturated by unreleased lactic acid and I am swollen by fibrotic edema, muscle fibrosis, and an unholy amount of fascia.

I can 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 is,  where do I go from here? I am praying that the Lord will find me a solution to this constant struggle I face each day, 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 live in constant pain.

I’ve since seen a Specialist at St George’s Hospital In London who are the leaders in this field and who have officially diagnosed me as having Lipodema with Stage 4 Lymphodema. I was told the NHS do not consider patients for liposuction, I would have to seek a private Specialist and fund this myself which is impossible for me financially. I have also volunteered to be a part of a genetics research program. 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 has happened in my case as my grandmother whom I never met on my fathers side had the same huge legs.

My mission now is for the remaining time I have left here on this earth to try and raise awareness of Lipodema so that it becomes a household name.

There are over ten thousand 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.

Yours truly