A woman suffering from the & # 39; sore fat syndrome & # 39; has talked about what it is like to live with a chronic health problem that cannot be controlled or prevented by diet or exercise.
Jen Matsas, an HR specialist from Sydney, is 31 years old and was diagnosed with lipedema last year – a little known condition affecting about one in nine women.
Lipedema is characterized by an abnormal and often extremely painful build-up of fatty tissue on the body – usually seen on the hips, thighs, lower legs and lower legs.
& # 39; (As a teenager) I knew my legs were different; not the & # 39; normal & # 39; form, & she said to FEMAIL.
& # 39; My waist was always so much smaller than my hips and the fat on my hips was so much more rounded and pronounced in comparison. & # 39;
Jen Matsas (photo) was diagnosed with lip edema last year – a condition that affects approximately one in nine Australian women
Jen first began to notice the symptoms of lip edema when she was 14 years old.
The condition often worsens for women during high hormonal events – the most important three are puberty, pregnancy and menopause.
As a younger woman, she said she could get a grip on how her body changed, despite the fact that she danced and watched what she ate, a struggle and a time & # 39; so isolating & # 39 ;.
When she wore a leotard to rehearse, she had what she described as & # 39; saddlebags & # 39; hanging on the sides, and finding a school uniform meant buying a skirt of size 16 to 18 and a top of 10 to 12.
Shopping for special events was also a challenge because it was virtually impossible for her to find something that suited.
Jen as a 16-year-old (photo) said that although she had not been diagnosed as a younger woman, she knew her legs were not & # 39; normal & # 39; goods
What is lip edema and who influences it?
* Lipedema is a chronic and incurable condition with an abnormal build-up of fatty tissue.
* It usually affects the thighs, buttocks and lower legs, and sometimes the arms, and may, although not always, cause significant tissue enlargement, swelling and pain.
* It can significantly reduce mobility, the ability to perform daily activities and well-being.
* Lipoedema mainly affects women. Figures show that 11 percent of women in Australia suffer from the condition. It is rare in men.
* It often occurs as a result of changes in female hormones and usually occurs around puberty
Source: Lipoedema Australia
Moreover, not having any diagnosis meant that she was stunned as to why she could not move the extra weight despite exercise and diet.
While Jen began to experience the symptoms of lip edema during puberty, the condition became much worse after she started taking the pill in her twenties.
At the age of 24 she started taking the contraceptive pill and within two months she had gained 15 kilograms.
& # 39; I have not noticed a real increase in my legs until I started taking the pill, & # 39; she said.
& # 39; I only put it out for four months before I switched until I found one that matched my body. Unfortunately, I did not lose weight after changing pills. & # 39;
Lipedema is characterized by an abnormal build-up of fatty tissue on the body – usually seen on the hips, thighs, bottom and lower legs
Jen (pictured with her fiancé, left) said her condition got much worse after she started taking the birth control pill
Around this time she also started & # 39; meat & # 39; experiencing pain in her thigh – feelings she described as soft and uncomfortable.
& # 39; The pain was hard to describe, but not something I had noticed before. It got worse over the course of about six months, she said.
As pain came and went in the intervening years, other painful symptoms began to arise.
& # 39; For example, my judge just would swell for no reason, although it was worse in the heat, & # 39; she said.
& # 39; It would hurt and (placing) ice did not really matter much to reduce swelling.
In addition, Jen said her arms and legs were covered with bruises that & # 39; totally inexplicable & # 39; goods.
& # 39; I have come to learn that these are all symptoms of lip edema, & # 39; she said.
Jen not only noticed that she was in pain, but also noticed that the extra fat on her body is & # 39; otherwise & # 39; felt.
In the initial phase, the fat deposits felt more like cellulite, but over time, this started to feel like & # 39; small peas under the skin & # 39 ;.
A sequential compression suit (a device that helps improve blood flow in the legs) helps Jen control the condition
Recognize the symptoms:
* Legs appear symmetrically swollen – swelling can occur from the hips to the ankles and your legs appear columnar; the feet are usually not affected.
* The affected areas feel & # 39; spongy & # 39; and cool and the skin is generally soft and subtle.
* Bruising easily in the affected areas.
* Small varicose veins or varicose veins in the affected areas.
* Legs and other affected areas are sensitive to touch.
* Legs and other affected areas hurt and feel uncomfortable.
Although Jen had lived with lip edema for more than ten years, she had not been formally diagnosed.
Extensive research gave her enough information to visit her doctor early last year, who confirmed that she was suffering from the condition.
Lipoedema is not medically recognized in Australia – despite the fact that the World Health Organization has classified it as a disease.
Although no cure is available, Jen believes that focusing on her health is the most important thing she can do to control her condition.
& # 39; I do a mix of things, including maintaining an anti-inflammatory diet, which means that all processed foods must be reduced. & # 39;
Jen believes that the focus on her health is the most important thing she can do to control the chronic and incurable condition
She also uses a sequential compression suit (a device that helps improve blood flow in the legs) and a vibration platform.
Jen does not take medication because she is still not convinced that sufficient published research has been done into the causes of the disorder.
Therapy in the form of manual lymphatic drainage (MPD) is also part of her regimen. The massage is thought to promote the natural drainage of the lymph.
Liposuction is a treatment option for the longer term, but not a cure. Surgery costs around $ 20,000 and is not supported by Medicare.
& # 39; Some days are rough and there are moments of & # 39; why I & # 39; but most of the time I just have to continue doing things because it doesn't make much sense to live, & # 39; said Jen
Jen, who is now a member of the Lipoedema Australia management, does everything it can to remain positive about its situation – and to support others through education.
& # 39; It's hard (because) your family and friends don't fully understand what you're going through every day, & # 39; she said.
& # 39; Some days are rough and there are moments of & # 39; why I & # 39; but most of the time I just have to continue doing things because it doesn't make much sense to live. & # 39;
Her advice to anyone who suspects they have this condition is to be willing to make a diagnosis at all costs.
& # 39; Do what I did and take a brochure to your doctor and tell them that you think you have this condition & # 39 ;, she said.
& # 39; If they are not receptive to the message, it is potentially time to move on. & # 39;
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