HSE working group yet to report on treatment options for those living with lipoedema 

The Lipoedema Support Network Ireland was co-founded by Carrigaline woman Anne-Marie McGoldrick.

A HSE working group set up three years ago to examine treatment options for a medical condition which affects one-in-ten women still has not reported back.

The working group and the HSE were not among the 400 people who attended Ireland’s first lipoedema conference, and demanded supports for women affected by the painful condition often mistaken for weight gain.

Lipoedema causes an abnormal build-up of fat in legs and sometimes arms. It can make simple movements such as kneeling impossible, and there is no cure for the estimated 10% of the globe's female population affected by the condition.

The Lipoedema Support Network Ireland was co-founded by Carrigaline woman Anne-Marie McGoldrick.

“Typically the onset is around puberty, that’s when the shape of your legs begins to change,” she said. "Typically you will have column-shaped legs, you will have what we call ‘cankles’ so you can’t see the ankle bone but also your legs are quite heavy and tender to touch.

“Even a dog jumping on your lap would leave bruises, and some people have orange-peel effect skin, it’s dimply skin.”

She set up the group because of how hard she found it to get information when first diagnosed.

“A lot of GPs don’t know about it. Your legs look big and they might not match the rest of your body so it looks like a weight issue,” she said.

“The advice is ‘you have to move more and eat less’ and that is important but moving more or eating less is not going to manage lipoedema.”

Ms McGoldrick said the working group and HSE were invited to attend but were not available.

“They are going to be issuing documentation in the near future, they have shown us this documentation but unfortunately it is already outdated before it’s even been released,” she said.

“It’s disappointing for us because we did go back to them (about this).” 

Audrey Comiskey from Kildare was one of many patients attending.

“My nickname in school was ‘treetrunks’ because I have lipoedema stage III in my legs. There was no way you could avoid it,” she said.

It was very difficult growing up. I could put my finger under the cuff at my ankle and my leg was like a tube. You have daily pain and you think everyone wakes up with this excruciating pain.

She uses conventional treatments such as heavy compression leggings to relieve this.

“Originally you’re told you’re fat by doctors and everybody around you,” she said. “You’re told it’s your diet, you’re a secret eater and that is very very common.”

She was first diagnosed with lymphoedema before being told it is lipoedema in 2022.

She now also gets specialist surgery in Bad Beizig near Berlin. “Since 2024, I’ve had four surgeries in 14 months,” she said.

“I’m like a transformed woman. I can lift my hands above my hands, I can wave, I can kneel down now and I’m much more active with my kids.”

Findings from a clinical trial on treatment will be published in the journal The Lancet shortly, doctors from the Ernst von Bergmann Hospital told the conference.

Fine Gael TDs Maeve O’ Connell and Jerry Buttimer also attended.

She said: “One of the key things is the lack of clinical evidence to improve treatment outcomes. There now has been a very effective clinical trial and that was presented here today, that will be published in a few weeks and this will feed into the working group process.

“That will finally start to influence the direction of travel to develop better treatment options.”

• Niamh Griffin is Health Correspondent.