A mom has candidly opened up about her harrowing lifelong ordeal dealing with a rare condition that causes her body to continually grow.
Shannon Ashley Nelson, from Minnesota, revealed she was constantly ‘yelled at’ as a child for being ‘too fat.’
The now 40-year-old grew increasingly self-conscious over her body and gave up everything she loved, including sports, theatre and seeing her friends.
But at age 33, after giving birth to her daughter, she researched ‘tree trunk legs,’ and came across a condition known as lipedema which she was later diagnosed with.
A mom has candidly opened up about her harrowing lifelong ordeal dealing with a rare condition that causes her body to continually grow (pictured is Shannon before her treatment)
Shannon Ashley Nelson, from Minnesota , revealed she was constantly ‘yelled at’ as a child for being ‘too fat’
The now 40-year-old grew increasingly self-conscious over her body and gave up everything she loved, including sports, theatre and seeing her friends (pictured is Shannon as a teen)
Shannon first realized that something was wrong during her teenage years.
Her calves and thighs became ‘too large’ for her body and she stopped wearing jeans or shorts because they no longer fit.
At 14 years old, Shannon had a free consultation with a plastic surgeon.
The medical professional said liposuction was an option but advised she lose up to 40lbs before she could go through with it – which proved to be impossible.
‘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 apologized for my body and dated men who preyed on that insecurity. As my legs grew, my life shrunk because I was so ashamed.’
But at age 33, after giving birth to her daughter, she researched ‘tree trunk legs,’ and came across a condition known as lipoedema which she was later diagnosed with
Lipedema is a long-term condition causing fat and connective tissue to build up in the legs, hips and bottom
Shannon said that after giving birth her body became ’round all over’ and she weighed 397 pounds at her heaviest.
But it was at this time that she was diagnosed with lipedema – a long-term condition causing fat and connective tissue to build up in the legs, hips and bottom.
In 2020, her condition took a turn for the worse and halted her life completely.
The mom 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 per surgery price.
As there’s no natural cure, surgical intervention is the only option, but it comes at a $20,000 per surgery price (pictured are her legs after undergoing treatment)
The process involves removing all fibrotic fat and lipoedema tissue from the legs to stop the progression of the disease (pictured is Shannon after undergoing treatment)
The process involves removing all fibrotic fat and lipoedema tissue from the legs to stop the progression of the disease.
To date, she’s had five removals between January 2022 and April 2023, with over 25 liters 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.
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 mom said.
‘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.’
To date, she’s had five removals between January 2022 and April 2023, with over 25 liters of fibrotic tissue taken out (pictured is Shannon after undergoing treatment)
While this has eased an ‘enormous’ amount of pain, Shannon still faces complications daily and requires further procedures, such as a lymphatic bypass
Shannon shared: ‘I’m still fighting to get back to a better place. I just want to be the mom my little girl deserves, and I can’t do that if my legs keep growing’
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.
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.’