Lipedema treatment for Leanne

I have Lipedema. You probably have never heard of it and neither did I. That is a picture of my legs and it was really hard to share it. I have hidden them as much as possible for most of my life because I was embarrassed by their size.

Let me fill you in on the key points of this condition so I can tell you why I need help. I will add a link at the end that can fill in any missing information. 

• Lipedema is a very painful and progressive condition.

• It is inherited and they say it affects almost 11% of women. It's commonly misdiagnosed as obesity and/or Lymphedema.

• Most Canadian doctors have never even heard of it.

• Lipedema is caused when the fat cells between your skin and muscles keep growing abnormally. It accumulates in a disproportionate but symmetrical way below your waist in your legs and sometimes arms. It can make a body look like it is a different size from the waist up.

• Lipedema often occurs at puberty and other hormonal changes in your body can cause it to progress such as pregnancy or menopause.

• It can affect the way you walk and cause extra strain on your joints. Women will often develop secondary lymphedema, other circulatory problems, and fibrosis, which will put them at high risk for life-threatening infections. It can lead to disfigurement and severe mobility issues.

• Lipedema fat cannot be gained it is already there and is resistant to diet and exercise. The only known cure is lymphatic sparing liposuction. Each patient would require multiple surgeries.

• There are more conservative therapies that are recommended to prevent the disease from progressing including lymphatic drainage therapy with compression therapy. Patients would eventually end up needing to wear compression garments 24/7.

• Currently there are no specialists available in Canada to treat this condition surgically.

• The provincial government has no coverage plan for treatment of any kind for this condition.

I first gained weight almost overnight when I was about 10 or 11 years old. My thighs were disproportionately larger than the rest of my body. My mom and I spent hours trying to figure out why but we really couldn't pinpoint where or how it happened.

My whole life since then has been a continuous cycle of dieting and exercise without very much success. I have had chronic pain in my fat but never knew that it wasn't supposed to hurt. I had knee problems for a number of years but whenever I went to the doctor I was always told to "just lose weight and you'll be fine". So I tried...by far the biggest attempt I made was in 2007. I decided to take up boxing, after 5 years of training I was successful in losing several sizes but only lost 50 pounds. I plateaued and was unable to loose any more weight and that is also the first time I noticed that I hadn't lost much on my thighs. I continue to suffer the emotional consequences of being fat, shame and low self esteem. 

Fast forward to 2016, I had been feeling quite unwell for almost a year at that point. I was having trouble walking up a flight of stairs. It was getting difficult to work on my feet doing hair for 8 hours a day. It was also when I met my current GP. He sent me to an orthopedic surgeon immediately and it was determined that I needed a double knee replacement due to severe early onset osteoarthritis along with several other conditions. I needed to know why and it led me to Lipedema. 

I am 40 years old. I had a double knee replacement surgery in July of 2018. They say my hips will need to be done in the next 5 or 6 years. I need medical intervention to treat this condition so it does not progress into lipo-lymphedema and immobility. I just got new knees I want to use them. I just want a good quality of life back. I may be stuck in this body that feels like a fatsuit but I'm not going to let it defeat me, I am ready to fight.

I am asking for help to pay for the lymphatic drainage therapy twice a month for a year. Compression bandages for each and once the inflammation in my legs goes down enough, compression garments to wear from now on. None of this is covered by Manitoba health as it is an underdiagnosed and relatively unknown condition. It looks like we are several years away from surgery being available in Canada. 

Thanks for taking time to read. Even if all this accomplishes is to educate and maybe help someone else, I will be happy.

Here is a good link to give you more information. I am also able to provide details about costs and answer any questions you have about my specific situation.

http://www.lipomadoc.org/lipedema.html