Lipedema Treatment

My daughter was recently diagnosed with Stage 2 Lipedema. Lipedema is a disorder characterized by symmetric enlargement of the legs and arms due to mutated deposits of fat beneath the skin.  When she began puberty, we started to notice her legs were getting larger in proportion to the rest of her body. We naively thought that she just carried her weight in her lower body. However, she always maintained a healthy body weight and her upper body was very thin. We thought let's just do more, diet more, exercise more, and it will get better. Sadly, 15 years later, nothing has changed. She continues to beat herself down and work harder every day to "improve" her body. The diagnosis was a major relief that came at a cost. This was validation that she had not been going crazy and also overwhelming that her efforts were mostly for nothing. Along with the discomfort and impaired lymphatic system, she developed a severe body image disorder, anxiety, and low self-esteem. Additionally, lipedema specialists are less common in the U.S. and so the treatment cost was a devastating blow. 

This fat disorder that is often mistaken for standard obesity. Lipedema's clinical diagnosis is an adipose tissue disorder or a lipid metabolism disorder. A typical patient is a woman who struggles with a larger lower body and upper arms, usually out of proportion to the rest of her body. Sadly, diet and exercise do not affect lipedema patients and can sometimes worsen the condition as the lymphatic system cannot operate. Exercise and diet may lead to weight loss in other areas, but the size of the hips and legs remains disproportionately large.

"Lipedema is both an excess buildup of fat cells in a particular area, and the expansion of those fat cells. Swelling in the interstitial fluid between cells may increase during the day in patients with lipedema, but does not usually cause “pitting edema.” Patients often complain of tenderness or pain in the fat, and report that they are easily bruised. Lipedema is a little recognized in the United States medical community, and many women go undiagnosed for years." (Lipedema Project)

Hormonal and hereditary influences usually trigger the beginning of Lipedema. Signs and symptoms of lipedema typically appear during puberty, pregnancy, or menopause. This often painful disorder usually worsens gradually.  In the early stages of lipedema, most individuals have a normal appearance above their waist. As the disorder progresses, the chest, torso, abdomen, and upper extremities may also become enlarged. People with lipedema suffer from Lipodystrophy the inability to make and keep healthy fat tissue, pedal edema - fluid accumulation in lower limbs lower leg swelling, and much more.

Along with the skin and fat being painful to the touch and constant swelling many people with lipedema suffer from serious psychological distress throughout the years. I have watched my daughter tirelessly eat a clean healthy diet, extreme exercise, and go through many deep emotional stages since puberty. 

My daughter's diagnosis came with treatment that includes 2 surgeries of lymphatic sparing liposuction to remove the diseased fat to reduce pain, months of MLD manual lymphatic drainage to improve lymphatic function, compression, and hormonal therapy. The surgeon fees and treatment will cost almost $50,000. This is an extreme amount of money and it is unfathomable that I could raise such an amount. I am in search of any help to cover treatment costs as we go on this journey. Treatment will change my daughter's life to live pain-free and have a more normal body that she has always longed for. 

Insurance companies prefer to reject this surgery because of its cosmetic tools for treatment. The surgeon's office helps to appeal this but the success rate is almost 0. Germany has been pioneers in the field and the rest of the world has a different classification for it to get insurance to cover the cost. We are hoping to pursue surgery this year. Your donations are extremely valuable as we work to get the funds for treatment as soon as possible.

There have been strides made this year in the study of this disease with the discovery of gene AKR1C1 for lipedema disease with a genetic basis. Research is linking lipedema and lymphedema more and more together.

If you know of someone or think you might have symptoms of lipedema please check out https://lipedemaproject.org/  for additional resources! There is a guide to find lipedema specialists across the country. 

I hope that you educate yourself on this disease and help us with the journey!!

Many many thanks,
Leslie




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Donations

  • Anonymous 
    • $20 
    • 26 d

Organizer

Leslie J. 
Organizer
San Mateo, CA
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