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Help a Single Mom Get Lipedema & Lymphedema Care

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Hi! My name is Shannon and I'm a 40yo single mom with lipedema, a painful and debilitating, yet under-recognized disease. I have a 7yo daughter, Sophie, and it's been frustrating for both of us to see how much worse my lipedema has progressed since I began perimenopause in 2020.

I've been supporting myself and Sophie by writing online since my daughter was an infant. In 2021, a decrease in traffic on Medium.com coupled with my ailing health but rising medical expenses crippled my finances and made it impossible for me to dream of paying for lipedema surgery without help. I've had to dramatically scale back on work to take care of complications like a serious leg ulcer. 

I also struggle with late-in-life diagnoses of autism and and inattentive ADHD, but writing gave me a great outlet to process those things. 

These days, pain and decreased mobility--with a hefty dose of brain fog is making everything a struggle. Still, I'm determined to keep working and writing. I just can't publish as much as I've used to, and I can't get through this period without help. 

I need lipedema surgery

Doctors missed my lipedema for 26 years.
A leading pediatric endocrinologist in Minnesota didn't recognize my lipedema and yelled at me monthly for being fat from age 5 to 14. He treated me for central precocious puberty and polycystic ovarian syndrome (PCOS) for close to 10 years and left me with deep emotional scars.

I thought something was wrong with my legs by the time I turned 12.

When I had a free consultation with a plastic surgeon to look at my legs at age 14, he didn’t recognize the lipedema either. I was about 135 pounds and nearly 5'6." I wore youth-sized tops (L/XL) and plus-sized junior bottoms (13/15). I was vegan and eating fewer than 1,000 calories a day. My calves and thighs were too large for the rest of me, and shaped like columns. I couldn't fit my calves into most jeans and had to look for very wide-legs.

The plastic surgeon said I needed to lose 20 to 40 pounds before considering liposuction. I went home and cried because I was already under eating.

The lack of a proper diagnosis reduced my quality of life. I quit wearing shorts or swimsuits at age 12 and avoided all activities where I was expected to show my legs... forever. I dropped out of theater as the roles required uncomfortable costumes. I apologized for my body and dated men who preyed on that insecurity. At every turn, I internalized the message doctors gave me: that I was doing something wrong and was solely responsible. I held back in life and made most decisions out of fear. 

As my legs grew, my life shrunk and I quit taking pictures of myself because I was so ashamed. I wish I knew my lipedema was going to get this bad. I wish I'd been more brave. 

After years of searching for an answer, I was 33 when I finally read about lipedema online. I was back in the Twin Cities and couldn't even find a doctor to treat me.

Today, I'm nearly 39 and won't get through this disease without surgery.

Lipedema surgery—done by an expert who understands how to individualize each treatment plan and respect the non-lipedema tissue—works. Experienced lipedema surgeons can release all fibrotic fat, and guess what?

It doesn't come back. Surgery (done well) stops the progression of disease.

Plus, lipedema patients who work with Dr. David Amron (the surgeon I plan to see) are often up and walking 15 to 20 minutes after surgery. Most are walking within 30 minutes, and most don't need pain medication that night. Most of his patients report some immediate pain relief after surgery.

In other words? Lipedema is often more painful before surgery than immediately post-op.

Some patients need multiple surgeries to remove all of the fibrosis. And some will wear compression garments long after their recovery, but the duration is usually reduced.

The hardest part of surgery is access. Insurance companies still fight it, and lots of us don't have insurance. Options like Medicaid or SSI disability don't cover lipedema treatments any better than pricey plans, and place low limits on income and choice of physicians.

It doesn't leave many of us with lots of options—especially when lipedema reduces our ability to work longer hours and earn extra money.

I'd like to think that going public with my own lipedema journey will help raise awareness and fight the heartless attitude that fat people are automatically responsible for their health problems.

What is lipedema? 
Lipedema, first noted in 1940, is described as an irregular distribution of painful fat and swelling in the legs, hips, and butt. It generally spares the hands and feet, but as it progresses, other body parts (stomach, arms, neck) can be affected. Lipedema fat isn’t reduced by diet or exercise. When patients try to lose weight but can’t improve their unusual proportions, many doctors who don’t recognize the disease call them non-compliant.

It occurs in an estimated 11% of females, and is often mistaken for obesity or lymphedema. Most people with lipedema aren’t diagnosed early stage, when their symptoms are mostly cosmetic. As time passes, it can lead to significant pain, impaired mental health, eating disorders, and countless debilitating complications.

Why don't more people know about it?
Health professionals don't often recognize diseases that aren't covered in medical school. Who decides which diseases deserve mention, awareness, or funding for research? Fat stigma has long squelched research into diseases that look like obesity; such bias leads people to look at lipedema bodies and call them fat. Once society labels a person fat, we view their health problems as self-inflicted.

Besides, it predominantly impacts women, and most adversely those without a lot of money. Fat, female, and far from wealthy—these are not priority patients.

We don’t know what causes lipedema or how to cure it. Activists are putting more money into research and raising awareness, but it's a long, uphill battle. "Conservative" treatments include uncomfortable—and expensive—compression garments plus manual lymph drainage. There is lipedema surgery, a highly specialized and precise form of liposuction. It's expensive and discouraged by insurance companies. Weird for those who supposedly prioritize preventative care.

I'd say pervasive fat bias still rejects the notion that one can be fat but not "at fault." The preferred narrative is that fat folks should fight and "do the work" to not be fat.

Why is it so hard to get lipedema treatment?
There still aren't many lipedema experts around the world. In fact, there's no branch of medicine that specializes in the disease. You have to find someone who chooses to study and understand a disease their colleagues are happy to ignore. You need an expert who will stay up-to-date with the latest research, put up with nonsense from insurance companies, and listen to their patients' experiences.

Not all self-proclaimed experts do this. Some lipedema surgeons offer less effective, more invasive, and higher-risk surgeries.

When lipedema sufferers want treatment, they need the time, money, and transportation to seek out the right doctors and treatments. This is no easy task. Insurance companies routinely ignore lipedema, denying necessary treatments every day.

Progress is happening, but it's slow.

Where does that leave lipedema patients?
Often, in a lot of pain. My lipedema keeps progressing, and I am miserable. It zaps my energy, and my life keeps shrinking. I do less and less, but hardly know how to talk about it. I can’t keep up with my house work, and do myself a great disservice by not admitting to myself (and others) that lipedema is ruining my life.

I haven't been honest about the extent of my pain over the past 16 months or so. My calves hurt constantly. There are sharp, stabbing pains, and dull but heavy, achey ones. The skin often feels sunburnt or painfully cold. The cold sensation is tingly and interrupts my sleep. Hypothermia of the skin is another lipedema symptom.

My sleep is suffering because my calves are much more tender than they used to be. My calves are now 31 inches around, and much of that skin is hard, extra sensitive to pressure, and in certain spots, scaly.

It’s incredibly difficult to find pants, socks, or boots that fit and don't exacerbate my symptoms.

My limbs are so large and swollen, I’m dealing with many more complications—leg ulcers, skin fold infections, itching, and a general discomfort at all times. Standing with my legs together puts painful pressure on my inner thighs. I can no longer stand and slip off shoes like I used to and my overall mobility and range of motion has suffered. Even laying on my stomach puts too much pain and pressure on my thighs and shins.

There is nothing I can do to get rid of lipedema cells on my own. Without surgical intervention, my limbs will keep growing and I will continue to feel worse.

I battle chronic plantar fasciitis, extra malaise in warm weather, sore spider veins, brain fog and orthostatic hypotension, yet I didn't know they were lipedema symptoms until this past week.

There is nothing I can do to get rid of lipedema cells on my own. Without surgical intervention, my limbs will keep growing and I will continue to feel worse.

More infections, less mobility.

It doesn't have to end this way. 
My lipedema has progressed to the point where I just can't keep up. It's no life for me and no future for my daughter. 

I'm crowdfunding to have the surgery with Dr. David Amron and finally get my life back. All funds raised will go for my medical expenses: multiple lipedema removal surgeries, manual lymph drainage, compression garments, plus transportation/lodging from Tennessee to California for the surgeries, and post-op recovery. 

Thank you so much for contributing or for sharing this campaign ❤ This is an absolutely life-changing surgery and will truly give me a new lease on life. It won't just change my world, but my daughter's too.

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Donations 

  • Anonymous
    • $20 
    • 9 hrs
  • William Sundberg
    • $50 
    • 13 hrs
  • Anonymous
    • $200 
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  • Dakota Duncan
    • $10 
    • 2 d
  • Anonymous
    • $25 
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Organizer

Shannon Nelson
Organizer
Cleveland, TN

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