Lipoedema sufferer praises “fantastic” NHS community nurses who help her manage her rare and painful condition


As a child, Pamela Dawe struggled with her weight and was constantly belittled for the size of her legs. What she didn’t realise was that she was suffering from a rare genetic condition which causes disproportionate laying down of fat cells - a condition which would affect her and her family throughout their lives. 

“I was always a big child, with large legs from an early age,” said Pamela, 62, from Downham Market.  “It was assumed that I was just fat and that was it.

“Other children would throw stones at me and call me names. It wasn’t a nice time, and I was in constant pain,” she continued. “But I just put up with it as I didn’t know what it was. I couldn’t wear long socks or tights because my legs were too big. 

“Puberty made things worse and when I was 15, I weighed 15 stone; when I had my first child at 19, I was 19 stone, and when I was 21, I was 21 stone.

“My legs were covered in horrible bruises, in fact once a lady stopped me in the street and advised me to get help as she thought I was the victim of domestic abuse.”

Despite Pamela following a strict diet and leading as active a life as she could, through her work as a carer for children with special and complex needs, she only ever put on weight.

Around six years ago, and weighing 28 stone, Pamela developed an ulcer in her leg and was forced to seek medical advice: “My legs started to ooze, and that caused a hole big enough to put your fist in,” described Pamela.

Pamela’s doctor suspected she had Lipoedema, and sent her to a specialist clinic at St James’ in King’s Lynn, run by Norfolk Community Health and Care NHS Trust (NCH&C). It was there that Pamela met the team of specialist nurses;

June Patterson, Mary Fredisdottir, and Sue Usher who confirmed that she had Lipoedema.

“When they explained what it was, it was like a lightbulb moment! I told my daughter, who also has the disease, and we looked it up. It was like a revelation 

“It took a year of intensive bandaging to get the swelling down and I am regularly measured for compression garments, which have to be specially made.”

NCH&C’s specialist service, based at St James’ Clinic in King’s Lynn, provides care for patients with Lipoedema and Lymphoedema, and serves the west Norfolk area.

Lipoedema is usually managed through compression therapy, bandages or garments that squeeze the affected limbs, exercise and massage. In some cases liposuction is used to remove the build-up of fatty tissue. 

Mary Fredisdottir, Specialist Nurse, said: “This is a rare condition, and its cause isn’t known although there are some genetic factors.

“Sufferers can find it very difficult to cope with the condition and the toll it takes both physically and mentally, and that’s why the right treatment is so important, as is the right support.”

Pamela, her daughter, sons and her 18 year old granddaughter all suffer from Lipoedema and are keen to raise awareness of the condition during June, which is Lipoedema Awareness Month.

“It’s not just physical; mental health problems are massive because of this. You know you’re trying your best – we go above and beyond to make sure everything is right in terms of diet etc - but it really affects you mentally. As time progresses and it affects your mobility it’s a really awful situation,” Pamela continued.

“I got to 28 stone but was eating a very clean diet but was just piling on the weight. It now affects my legs and my arms and that makes it even harder. I can see why people just don’t come out of their houses.

“The service has been a godsend. Mary, June and Sue are a fantastic team.”

Pamela and her daughter Michaela are now trustees of the support group Talk Lipoedema, and their aim is to start a support group in their area so that more people can learn more about how to live with the condition and to find the help and support they need.

More details about the group are available at: http://www.talklipoedema.org/

More information about Lipoedema can be found here: http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx

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