A mother bullied for having “legs like a tree trunk” and “being chunky” discovers she has a rare and disabling disease.
Shannon Ashley Nelson, 40, was constantly “yelled at” as a child for being “too fat.”
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The mother gave up everything she loved; including sports, theater and seeing her friends as she became very self-conscious about her body.
At age 33, after giving birth to her daughter, she researched “tree trunk legs” and came across a disease known as lipoedema, a genetic condition that causes an abnormal accumulation of fat on the legs, hips, butt and sometimes the arms.
It is often confused with obesity, but patients – usually women – have no control over the accumulation of fat in their limbs, which can be painful.
It was later confirmed that Shannon had exactly this condition.
As my legs grew, my life shrank because I was so ashamed
Shannon Ashley Nelson
Now she hopes to raise awareness with her story after waiting more than 30 years for an answer – but says the whole ordeal has “destroyed” any chance of living “normally”.
“I’m doing myself a huge disservice by not admitting that this is ruining my life,” said the stay-at-home mom. Need to know.
“I’m unhappy and it destroys me energy.
“I can’t do household chores or spend precious time with my daughter.
“I hate that my daughter doesn’t have many pictures of me because of my insecurities and the pain I’m suffering.
“I am missing – and have lost – a lot of things because of this.
“It made me feel like a monster.”
CONSTANT PAIN
At 14, she had a free consultation with a plastic surgeon because she knew something was wrong.
As her calves and thighs were “too big” for her body, she stopped wearing jeans and shorts as they no longer fit.
Although liposuction was an option, Shannon, from Minnesota, USA, was advised to lose up to 20 pounds before she could do it – which she couldn’t.
Lipoedema fat is different from normal excess weight and does not respond to low-calorie diets or exercise regimens, according to Lipedema UK.
I can no longer stand up and my general mobility has suffered – even lying on my stomach puts a lot of 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 I was solely responsible.
“I kept trying diets and eating healthy, but when the scale never went down, I blamed it on a lack of willpower.
“I held myself back in life and made most decisions out of fear.
“I apologized for my body and dated men who took advantage of that insecurity.
“As my legs grew, my life shrunk because I was so ashamed.”
After giving birth, her body became “round” and, at her heaviest point, she weighed 28 kg.
In 2020, his condition worsened and completely disrupted his life.
The mother said: “I had sharp, stabbing pains as well as dull, aching pains.
“My skin was sunburned or extremely cold, which still interrupts my sleep.
“My limbs are so big and swollen that I am also dealing with ulcers, infections, itching and general discomfort.
I just want to be the mother my little girl deserves – and I can’t do that if my legs keep growing
Shannon Ashley Nelson
“I can no longer stand up and my general mobility has suffered – even lying on my stomach puts a lot of pressure on my thighs.
“I even have trouble standing up long enough to shower.
“I was planning a trip to Disney with my daughter before things got worse.
“That’s just a distant dream.”
‘LONG WAY TO GO’
As there is no natural cure, surgical intervention is the only option – but it costs $20,000 (USD) per surgery.
The process involves removing all fibrotic fat and lipoedema tissue from the legs to halt the progression of the disease.
To date, she has carried out five removals between January 2022 and April 2023, with more than 25 liters of fibrotic tissue removed.
Although this has relieved a “tremendous” amount of pain, Shannon still faces complications daily and requires additional procedures, such as a lymphatic bypass, which aims to redirect fluid to the veins in her arms and legs.
What are the signs and symptoms of lipoedema?
LIPOEDEMA is a genetic disease that almost exclusively affects women.
Some estimates believe it could affect up to 10% of the adult female population.
It causes excessive accumulation of fat on the buttocks, thighs, legs and sometimes the arms.
You may also feel pain, tenderness, or heaviness in the affected limbs and 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 changes, such as pregnancy or menopause.
It usually affects the body symmetrically, meaning you will have excess fat on both legs.
The affected skin may feel soft and cold and have dimpled “orange peel” texture.
Lipoedema fat is different from normal excess weight caused by obesity and does not respond to low-calorie diets or exercise regimens.
How can I treat lipoedema?
There is currently no cure, but there are things that can help and stop it from getting worse.
Your treatment will depend on the severity of your symptoms and how they affect you.
The main treatments are:
- Eat healthier, exercise more and try to maintain a healthy weight
- Wear compression socks or bandages to reduce pain and discomfort and make walking easier
- taking care of your skin – for example, regularly using moisturizer to prevent dry skin
- Counseling or cognitive behavioral therapy (CBT) if you are finding it difficult to cope with your symptoms and feel depressed
- A procedure to get rid of fat (liposuction) if your symptoms are particularly severe – you may need more than one operation and may not be available on the NHS
Sources: Lipedema UK, National Health Service
For now, she hopes her story will be heard to raise awareness and funds to receive this “life-changing” operation, with $182,221 raised of the $220,000 so far.
She added: “It’s a struggle to be taken seriously.
“I can’t keep up anymore and it’s not life for me or my daughter.
“I still have a long way to go, but I am proud of my courage in speaking out and taking action.
“My goal is to get back to walking long distances and losing weight, which is an uphill battle with [my condition].
“Right now, my biggest challenge is simply meeting all of my medical needs to take care of my overall health while trying to recover.
“I’m still fighting to get back to a better place.
“I just want to be the mother my daughter deserves – and I can’t do that if my legs keep growing.”
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This story originally appeared on The-sun.com read the full story
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