Whaplode woman fighting to raise awareness of incurable weight gaining condition

Tess Sanderson always knew there was something different about her body, but it took more than 40 years before she was diagnosed with Lipoedema and now she’s determined to help others living with the condition.

Tess was just eight when she first noticed pains in her legs and then as a teenager became aware the bottom half of her body was much bigger than those of her peers.

She continued to gain weight despite exercising as much as she could and later found her size was impacting on her mobility, and other areas of her life.

She was 49 when a nurse told her she had stage IV Lipoedema – a chronic disease which mostly affects women and is characterised by abnormal excess tissue in the hip region, upper and lower leg area. It can also affect the upper arms and torso. Because it took her so long to get a diagnosis, Tess, a laughter yoga practitioner and inclusive wellness coach, now fears her condition will only get worse and that she will eventually need a wheelchair.

“It started when I was about seven or eight – I went from being very elfin like and six months later I looked like someone had blown me up,” recalls Tess (56), of Whaplode.

“In my teens I was pear shaped – a size 12 top with 16 to 18 bottoms and between my 30s and 40s I was really big. Everyone just thought I was overweight, but I was in pain all the time - even just walking.

“There’s no cure, and no-one really cares. I hit rock bottom, but you have to get back up and I’m the sort of person who wants to help, to stop other people going through this.”

Since diagnosis, Tess has found support groups online and started working with Lipoedema UK - a charity dedicated to raising awareness, diagnosis, treatment and research around the condition.

June 1 marks the start of Lipoedema Awareness Month, which includes the charity’s annual conference near Milton Keynes when attendees can go to consultations and workshops as well as meet other sufferers and listen to experts speak about the condition.

Although there is no cure for Lipoedema, compression therapies can help while in some cases liposuction can also be considered, although only very few operations are carried out on the NHS, while others seek treatment both at home and overseas at costs of up to £60,000.

Tess says her condition is too far gone and lack of funds make that an impossible option for her, so she is focussed on campaigning to help others whose quality of life and mental well-being is suffering due to the impact of Lipoedema.

“There’s just not much information available, not many people know about the condition,” she added, “even many GPs do not accept Lipoedema is real, they misdiagnose it or simply put it down to obesity.

“We need to do more otherwise most sufferers will end up in a wheelchair and cost the NHS more.

“I just wish someone had told me when I was 19, when I’d gone to hospital with these pains in my legs.”

Tess has taken part in Miss Voluptuous pageants to highlight the condition and regularly attends other events to help raise awareness.

Next month she is also participating in the Warrior Charity Pageant, which promotes awareness of invisible illnesses.