I have Lipedema. Lipedema is a chronic, progressive disorder of subcutaneous tissue that affects the lower extremities of women. Also known as “two-body syndrome.” If you were to see me my top half of my body, you’d see a normal 40-year-old women. If I step off from behind that counter,you’d take a step back and think that both of my legsswallowed a manatee. The fat accumulations in lipedema are unsightly and painful. Lipedema is not mere weight gain in particular parts of the body. Lipedema sufferers cannot simply shed the pounds by changes in lifestyle or even by taking extreme weight loss measures. The disorder is characterized by easy bruising, sensitivity to touch, and pain in affected extremities. I suffer from all classic symptoms. Lipedema is a serious medical condition that affects nearly 11% of women across the world.
My goal is to show that Lymph-sparing liposuction using local anesthesia is currently the only effective treatment for lipedema and that it is far from experimental.
Lymph-sparing Liposuction for Lipedema is not not Experimental: There are over forty, peer-reviewed journal articles reviewing the benefits, efficacy, and safety of tumescent, lymph-sparing liposuction as the only surgical treatment for lipedema. The latest, (FEB 2020) is very favorable toward tumescent lymph-sparing liposuction: Prevention of Progression of Lipedema WithLiposuction Using Tumescent Local Anesthesia: Results of an International Consensus Conference. https://www.ncbi.nlm.nih.gov/pubmed/31356433
Several other studies completed at Stanford University Medical Center and other research institutions that identify the benefits liposuction for lipedema can offer. These studies also identify that liposuction for lipedema is completely safe and effective for patients. Multiple studies from Germany have reported long-term benefits for as long as 8 years after liposuction for lipedema using tumescent local anesthesia.
Lipedema is genetic: My grandmother died before I was born. She too had this disproportion body, and leg problems classic in Lipedema. She died in her 50’s as a result of a stroke. Further, I watched my mother struggle with her legs my entire life. My mother was a great nurse, helping people every day. As the disease progressed, she needed to move to a resource/ education nurse to limit the amount of time standing. She had painful, swollen, bruised legs that left her hospitalized with cellulitis multiple times. At one point she was at risk of losing one of her legs. She wore compression garments for years, just as I am but the disease is progressive. Her doctors gave her water pills for years, that left her in a sort of “house prison”, she had to remain within feet of a bathroom. We now know, these water pills make the condition worse.
My mom died this past December 2019 at the age of 69 after having a massive stroke, just like my grandma. I have three young children ages 4, 9, and 12 and I owe it them to break this cycle. I understand that researchers in Arizona have isolated the gene responsible for Lipedema! This is a huge step for women suffering.
I have done all conservative treatment: I am a hard-working business professional. I grew up on a small farm, I was the first in my family to get a 4-year college degree. Today I have a master’s degree and am a senior level manager at the world headquarters for a fortune 200 company. I’ve been promoted 8 times in the 17 years with the company. I volunteer teaching Sunday school. I’ve volunteered at food shelves. I serve as the President for a non-profit aimed at providing scholarships for students in need to attend college. I work hard in all areas to strive to be a better employee, manager, mom/wife. I’ve worked with my leg doctor, Dr. Sparks. I use medical grade compression garments, have had surgery to fix the vein problems, tried to maintain low carb a diet, do yoga 3 days a week, walk as much as possible with my “manatee” legs. At the recommendation of my doctor I purchased an expensive manual lymphatic drainage system (from Tactile Medical) that I spend 1 hour every day to manually attempt to reduce the impacts of this disease. All of these conservation attempts provide only minor benefits, the disease is worsening. Dr. Sparks strongly recommendsthis lymph sparing liposuction procedure for me. Dr. Wright is among the best in the United States for this procedure and he agrees that I am ideal candidate for this procedure. It will positively impact the quality of my life and reduce my symptoms.
This Procedure is reconstructive, not experimental and not cosmetic: To be considered reconstructive liposuction must be illustrated and documented to: Improve function or mobility (restriction of movement), restore to a normal appearance (not improve appearance), improve the Quality of Life (QOL) of the patient, and there are no comorbidities precluding treatment (i.e., vascular problems). There are currently (FEB 2020) “Bad Faith / breach of contract” suits in California against about a half-dozen insurance companies on behalf of patients with lipedema who were denied coverage for this procedure. It is expected that most insurance companies will change their policies as a result and reimburse based on the reconstructive surgery conditions.
My ask is that I don’t need to wait to be treated.
Before I take questions, I’d like to share: My youngest child, a little girl (age 4), asked me the other day why mommy’s legs hurt, and daddy’s legs don’t. I want to be able to have her sit on my lap without pain and getting bruising due to it. I want to be able to play with her on the floor without pain. And more than anything I want this disease recognized for what it is before she (very likely)develops Lipedema as she matures into the wonderful women, I know she will become.
This was my plea to insurance to cover this procedure. It was declined. It’s approved with my same insurance in other states but not in MN.
I did not give up. Stay turned for what I did next.
Val Velde
My Journey 