A MUM bullied for having ‘tree trunk legs’ and ‘being chunky’ discovers she has a rare and crippling condition.
Shannon Ashley Nelson, 40, was constantly “yelled at” as a child for being “too fat”.
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The mum-of-one gave up everything she loved; including sports, theatre and seeing her friends, as she grew too self-conscious over her body.
At age 33, after giving birth to her daughter, she researched “tree trunk legs” and came across a condition known as lipoedema, a genetic condition that causes an abnormal buildup of fat in the legs, hips, bum and sometimes the arms.
It’s often mistaken for obesity but sufferers – usually women – have no control over the accumulation of fat across their limbs, which can be painful.
It was later confirmed that Shannon had this very condition.
As my legs grew, my life shrunk because I was so ashamed
Shannon Ashley Nelson
Now, she’s hoping to raise awareness with her story after waiting over 30 years for an answer – but says the whole ordeal has “shattered” any chance of living “normally”.
“I’m doing myself a great disservice by not admitting that it’s ruining my life,” the stay-at-home mum told NeedToKnow.
“I am miserable and it zaps my energy.
“I can’t keep up with the housework, or spend precious time with my daughter.
“I hate that my little girl won’t have many photos of me because of my insecurities and the pain I’m suffering.
“I’m missing – and have missed out – on so much because of this.
“It’s made me feel like a monster.”
CONSTANT PAIN
At 14, she had a free consultation with a plastic surgeon, as she knew something was wrong.
As her calves and thighs were “too large” for her body, she stopped wearing jeans and shorts, because they no longer fit.
While liposuction was an option, Shannon, from Minnesota, US, was advised to lose up to 40 lbs before she could go through with this – which wasn’t possible.
Lipoedema fat is different from normal excess weight and it doesn’t respond to low-calorie diets or exercise regimes, according to Lipoedema UK.
I can no longer stand and my overall mobility has suffered – even laying on my stomach puts too much pressure on my thighs. I even struggle to stand up long enough to shower
Shannon Ashley Nelson
Shannon said: “I thought I was doing something wrong and was solely responsible.
“I kept trying diets and eating healthily, but when the scales never went down I blamed having no willpower.
“I held back in life and made most decisions out of fear.
“I apologised for my body and dated men who preyed on that insecurity.
“As my legs grew, my life shrunk because I was so ashamed.”
After giving birth, her body became “round all over” and at her heaviest, weighed 28st 5lbs.
In 2020, her condition took a turn for the worse and halted her life completely.
The mum said: “I had sharp, stabbing pains, as well as dull and achy ones.
“My skin felt sunburned or painfully cold, which still interrupts my sleep.
“My limbs are so large and swollen, that I’m also dealing with ulcers, infections, itching and general discomfort.
I just want to be the mum my little girl deserves – and I can’t do that if my legs keep growing
Shannon Ashley Nelson
“I can no longer stand and my overall mobility has suffered – even laying on my stomach puts too much pressure on my thighs.
“I even struggle to stand up long enough to shower.
“I was planning a trip to Disney with my daughter before things got worse.
“Now that’s just a distant dream.”
‘LONG WAY TO GO’
As there’s no natural cure, surgical intervention is the only option – but it comes at a $20,000 (USD) per surgery.
The process involves removing all fibrotic fat and lipoedema tissue from the legs to stop the progression of the disease.
So far, she’s had five removals between January 2022 and April 2023, with over 25 litres of fibrotic tissue taken out.
While this has eased an “enormous” amount of pain, Shannon still faces complications daily and requires further procedures, such as a lymphatic bypass, which aims to redirect fluid into the veins of the arms and legs.
What are the signs and symptoms of lipoedema?
LIPOEDEMA is a genetic condition that almost exclusively affects women.
Some estimates believe it may affect up to 10 per cent of the adult female population.
It causes an excess buildup of fat on the bottom, thighs, legs and sometimes the arms.
You may also have pain, tenderness or heaviness in the affected limbs, and you may bruise easily.
These physical effects can cause fatigue, joint problems, swelling, reduced mobility, flat feet and gait problems.
Symptoms usually begin around puberty or at other times of hormonal change, like pregnancy or menopause.
It usually affects the body symmetrically, meaning you’ll have excess fat on both legs.
The affected skin can soft and cool and may be dimpled with an “orange peel” texture.
Lipoedema fat is different from normal excess weight caused by obesity, and it doesn’t respond to low-calorie diets or exercise regimes.
How can I treat lipoedema?
There’s currently no cure, but there are things that can help and stop it getting worse.
Your treatment will depend on how severe your symptoms are and how they’re affecting you.
The main treatments are:
- Eating healthily, doing more exercise and trying to maintain a healthy weight
- Wearing compression stockings or bandages to reduce pain and discomfort, and make it easier for you to walk
- looking after your skin – for example, by regularly using moisturising cream to stop your skin drying out
- Counselling or cognitive behavioural therapy (CBT) if you’re finding it difficult to cope with your symptoms and you feel depressed
- A procedure to get rid of the fat (liposuction) if your symptoms are particularly severe – you may need more than one operation and it may not be available on the NHS
Sources: Lipoedema UK, NHS
For now, she hopes for her story to be heard to raise awareness for others and raise funds to receive this “life-changing “ operation, with $182,221 raised out of $220,000 so far.
She added: “It’s a struggle to be taken seriously.
“I can’t keep up anymore and it’s no life for me or my daughter.
“I still have such a long way to go, but I’m proud of my bravery to speak up and take action.
“My goal is to get back to walking long distances again and to lose weight, which is an uphill battle with [my condition].
“Right now, my biggest challenge is simply keeping up with all my medical needs to manage my overall health as I try to get back on my feet.
“I’m still fighting to get back to a better place.
“I just want to be the mum my little girl deserves – and I can’t do that if my legs keep growing.”
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