'People often think I'm fat - but I have a painful disease that wrecks women's lives'

A mum says she nearly lost her life after she was wrongly with obesity instead of a common condition.

Vanda Lima, from Poole, Dorset, has been searching for answers to solve her constant gain her "entire life". After spending 40 years living in the dark, she was finally given a diagnosis for the mystery condition, which leaves her struggling to walk up the stairs.

In June this year, a vascular surgeon confirmed to Vanda that she has lipoedema, an illness which sees a huge increase in fat around the legs, hips, and arms, which is painful to the touch and resistant to dieting and exercise. When she was just 18 years old, Vanda was left fighting for her life in hospital after she was wrongly given a powerful appetite-suppressant . At another desperate stage, she spent £70 per week on a milkshake diet.

READ MORE:

"It was very expensive - I had to pay £70 pounds per week to get the shakes and the cereals," said Vanda. "I did that for eight months - eight months without eating anything but cereals and shakes. I almost lost all my hair, my nails stopped growing and my legs were still big." One medical professional even tried to get her to have a dangerous surgery, despite her warning surgeons something more sinister was going on.

Vanda fears she will "end up in a wheelchair" because the can grow so rapidly, which is also due to hormonal changes during puberty, and menopause. Despite her condition being common, with an estimated 11 per cent of adult women affected worldwide, very few physicians seem actually aware of it. The mum, who has dual Brazilian and British nationality and lives with her partner and their 18-year-old son, said: "My entire life has been like a battle. It is really difficult because you get judged by people, including doctors.

"They don't believe you and it feels like they don't really listen." She continued: "In Brazil, America and Spain, they know more - and in the United States, a lot of health insurances offer to cover the costs for treatment of lipoedema. But in this country - it's really backwards. The only thing they prescribe is compression garments - that's it." Vanda explained that she first showed symptoms of around the age of 12 - and the swelling in her legs was immediately perceived by those around her as mere weight gain. "I didn't know I had this illness but I knew there was something wrong because I never ate too much and I always exercised," she said.

Speaking about her , she said: "This illness is horrible. You are in pain all the time. I cannot do a lot of exercise, especially high-impact exercise, I cannot walk for long, I struggle walking up and down the stairs... It never goes away and I don't even know what it would be like to live in a reality where I am not in pain." According to recent medical research, the most effective surgical procedure to remove lipoedema fat from the limbs and ease the pain and mobility issues is liposuction. However, lipoedema surgery is not currently available on the , despite it being very different from a cosmetic intervention.

It requires specialist knowledge, with only a handful of in the UK offering to perform the surgery privately, at a cost of up to £11,000. Vanda said: "A lot of people with this disease have to go private, but it's very expensive. And not only is it too expensive but one operation is not going to sort me out - I have to do at least three. This is the case for most women who have lipoedema. It's just frustrating because I know it's going to get worse and in the worst-case scenario, I could end up in a wheelchair."

According to the charity Lipoedema UK, there is evidence that liposuction can reduce tissue bulk, pain and bruising and improve mobility and quality of life." However, in 2022 The National Institute for Health and Care Excellence (NICE) published a report, "Liposuction for Chronic Lipoedema", which stated that the evidence on the efficacy and safety of liposuction for chronic lipoedema is "inadequate," and called for more to be done.

Joining online groups dedicated to discussions about living with this condition and following the work of charities such as Lipoedema UK and Talk Lipoedema, has helped Vanda find community - and renewed hope that care for women who have this illness can improve in the future. She said: "My hope is to have the surgery available on the NHS and, more importantly, to share knowledge with all the women who may not know they have this horrible illness - especially the young ones! I don't want what has happened to me to happen to others. Knowledge is power."