A mum has shared her harrowing lifelong ordeal dealing with a rare condition that causes her body to continually grow.
Shannon Ashley Nelson, 40, was constantly “yelled at” as a child for being “too fat” up until the age of 14.
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.
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At age 33, after giving birth to her daughter, she researched “tree trunk legs” and came across a condition known as lipoedema – later confirmed as the case.
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 What’s The Jam.
“I am miserable and it zaps my energy.
“I can’t keep up with the housework, or spend precious time with my daughter.
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“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.”
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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.
She 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.”
Lipoedema is a long-term condition causing fat and connective tissue to build up in the legs, hips and bottom.
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 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.”
As there’s no natural cure, surgical intervention is the only option – but it comes at a $20,000 (USD) per surgery price.
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.
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 (USD) 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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