'Women are dying': Experts call for lipoedema to be taken seriously
The chronic condition is incurable and millions are affected
A plastic surgeon who treats around 1-hundred women with Lipoedema a year is calling for it to be taken seriously, after the death of a patient.
Around 11% of women across the world have the incurable condition which causes an abnormal build up of fat cells in parts of the body.
It's similar to Lymphoedema which is a build up of fluid.
But, treatment for it isn't available on the NHS as it's classed as cosmetic.
So, often women have to raise money themselves for Liposuction.
That's what happening with 20-year-old Clodagh who has had the condition for the last two years.
If women can raise money for surgery, one of the people they might go to is Plastic Surgeon Dr Anne Dancey who works in places like Solihull.
On her website it says:
"Lipoedema and lymphoedema patients have many similarities, as there is both a fat and fluid component to both these conditions.
"Both conditions are misunderstood and poorly managed by many healthcare professionals. Lymphoedema nurses in the UK are, undoubtedly, the mainstay of managing both these conditions.
"Yet, their services are poorly funded and under resourced. As a consequence, there are many patients in the UK lacking support and care.
"I have been humbled and privileged to develop my practice with lipoedema patients. I have operated on many from throughout the country and around the world.
"I am one of the few surgeons offering surgery for patients with Stage 1-4 of the condition.
"Also, I have developed a multidisciplinary team, including a lymphoedema nurse, clinical psychologist and anaesthetist with a specialist interest in lipoedema.
"I currently operate on over a hundred new lipoedema patients per year and many of these require several procedures to fully treat the disease."
We caught up with Anne as we launch our investigation 'A Life With Lipoedema':
"Most of my patients need at least two or three (operations), some of them 15 or 20 to get rid of it all.
"They're all so upset about it, because it's really damaged their self-esteem over the years.
"I've had a lady die before surgery"
"I've had a lady unfortunately die, who I'd seen in consultation and we were planning her surgery.
"She was in such a bad way, she couldn't walk and it was so rapid onset.
"It was soul destroying because she died before she managed to get surgery.
As part of her team, Dr Anne Dancey works with Clinical Psychologist Femke Leathes who provides support for patients around their surgery.
She meets with them before and after to help them through the process:
"I think the biggest thing that needs to happen is early diagnosis and when I say early, I mean within a year of onset.
"In order for that to happen, we've got to improve the awareness and knowledge and expertise in Lipoedema among medical health professionals, GPs, but also school nurses.
"These women have dealt with very difficult a physical health condition that's stigamised, misdiagnosed, causes mobility issues, it just affects them every minute of every day.
"If people at least had a name for their condition and access to literature and understanding, and a way of managing some of that stigma, that would help tremendously to stem some of the difficulties with self-esteem and not feeling good enough.