June is Lipedema Awareness Month

Sarahlicious
on 6/3/13 7:47 am - Portsmouth, OH

I have Lipedema in addition to Lymphedema. Do your legs remain fat despite losing weight? 11% of women have Lipedema. It is an often undiagnosed condition. As part of Lipedema Awareness Month I have compiled information and resources on my blog.

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June is Lipedema (Lipoedema in UK/AUS) Awareness Month so I thought I’d post some helpful information and resources. I recently found many of these pages and Facebook groups and finally feel like I belong, there ARE others out there who understand.

WebMD (we’re FINALLY on WebMD) describes Lipedema as a condition that affects up to 11% of women. It occurs when fat is deposited abnormally beneath the skin, usually in the buttocks and legs. Although it begins as a cosmetic concern, it can progress to cause pain and other problems.

Excellent video:

 

Dr. Karen Herbst for Cure Lipedema Awareness PSA

Here are some informative websites/links:

Cure Lipedema - http://www.curelipedema.org/

Lipedema Simplified - http://www.lipedema-simplified.org/

Lipoedema UK - http://www.lipoedemaladies.com/

Dr. Herbst’s website - http://www.lipomadoc.org/lipedema.html

Fat Disorders Research Society - http://www.fatdisorders.org/follow-up-to-living-life-with-li pedema/

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Fellow Lipedema Bloggers:

Big Leg Woman - http://www.biglegwoman.com/

Living with the Lip - http://lipedemagirl.tumblr.com/

Molly Peterson - http://www.mollympeterson.com/2012/11/i-have-lipedema/

Born2lbFat Living with Lipedema posts - http://born2lbfat.com/?cat=90

Do you have a Lipedema/Lipoedema website or blog to recommend? Please share it in the comments section. I will update this post with suggestions!

I have Lipedema and Lymphedema. I also have a passion for Obesity and Health Insurance Advocacy

Blog: born2lbfat.com Facebook: Born2lbFat Twitter: @born2lbfat

Nancy6540
on 6/4/13 6:14 am - Orlando, FL

I had my RNY in April 07,  yet my legs remain fat as well as my arms.  I was JUST diagnosed last week with Lipedema and Lymphedema.  Thank you for post and sharing your story as will as the links to more information.  I am 51 and just now finding out about all this.  I start my leg wraps next week.  My head is spinning with all this information.  Please ladies if this discribes you search for a Doctor that will be able to diagnose this.  I saw a vascular surgeon and that is who told me what I had.  Thanks again Sarah you are my role model.

Sarahlicious
on 6/4/13 6:59 am - Portsmouth, OH
You're welcome! If you have any questions feel fee to ask!

I have Lipedema and Lymphedema. I also have a passion for Obesity and Health Insurance Advocacy

Blog: born2lbfat.com Facebook: Born2lbFat Twitter: @born2lbfat

chunkymunky
on 7/30/15 3:39 pm - TX

Do you know of a doctor in Houston Texas that I can see to get a diagnoses

AZDee
on 8/17/15 8:37 am - Gilbert, AZ

I will ask my daughter who got her recent lipedema diagnosis in Houston, but she is also has a appointment to see Dr Karen Herbst in Tucson so she can move forward with insurance coverage for her tumescent liposuction to remove the lippy fat cells.  

chunkymunky
on 8/17/15 4:05 pm - TX

Thank you so much . I will appreciate it so much!

AZDee
on 8/6/15 6:27 pm - Gilbert, AZ

After losing the needed weight to finally get into the normal weight category one would think life is good.  But that is not always the case.  For some of us we are left with a body that we would not want to be seen in a bathing suit.  For many there is extra skin that needs to be removed which seems to be covered in length here, but I would like to address something else, a disproportioned  body that is left after the weight loss.  I was super thing on top but my lower body was still a mess.  I had no idea that there was something else going on...my legs had fat pockets around the knee area that just would not come off and also saddle bags from hell...These things really stand out when you are otherwise thin.  So I went for a lower body lift to help with those things.  Only problem was after the surgery I found my self now gaining weight.  I had not changed my eating and in fact I was now dieting and trying to lose it but with little response from my body.  My calves that had been so wrinkly due to weight loss were now filling back up and getting tight.  Then one day as I was feeling my swelling of my calves I noticed this little ridge right above my ankle.  What the heck was that??? I am well over a year from surgery for the lower body lift, so it is not swelling from that.  Turns out I have a condition that 11 percent of women have, it's called lipedema.  I have a different type of fat cells in my lower body and also in my upper arms which cause them to expand weaken and be filled with fluid that  leak and cause swelling. Lipedema can be trigged by certain events such as puberty, pregnancy and surgeries (such as in my case).  Actually mine I am sure started when I was 14 and went from a underweight child to a overweight teen in just one year.  One does not have to be over weight to have it, it's just many people that are overweight have both kinds of fat.  Left untreated will only get worse and could lead to a condition that my Mom had that was diagnosed as lymphedema and caused her to be in a wheel chair for the last 20 years of her life.  I now believe she actually had lipo-lymphedema it's actually lymphedema that started out as lipedema and was never treated.  I always remember my Mom being fairly thin but having these really big legs.  I just thought my sisters and I were built the same way as my Mom.  Had no idea this is a condition that can be passed down.  In fact one of my daughters has just received her official diagnosis of lipedema.  Lipedema has 4 levels and if untreated could progress.  I am in a later stage 2.  I write this to warn any of you out there that may think you have a disproportioned  body that is resistant to diet, to look into this.  Lipedema fat is unaffected  by diet, so weight loss whether it be by diet or surgery will have no effect on it.  These cells need to be removed, the current treatment for this is what is known as WAL liposuction , (water assisted liposuction).  Where the surgeon injects a saline solution and then flushes out by liposuction the fat.  This procedure is a gentler way of removing the fat without disturbing the lymph system. This is usually done with twilight sedation.   With 11 percent of women having this condition, which for the most part goes misdiagnosed as simply being overweight, I know there are many here that may in fact have this disorder too.  The good news is the medical community is becoming aware of this condition and insurance companies are now starting to pay for treatment.  The WAL liposuction is not a cosmetic procedure even though there are some cosmetic benefits  too...  I urge you to do a google search of Lipedema and see if you have any of the many signs of this condition.

 

 
csampson1272
on 9/10/15 1:22 pm

I have been diagnose with Lipedema and Lymphedema. Just had my first phone consultation in Ga. Learned I am the pefect candidate to have this procedure and although thisisn't considered cosmetic surgeory insurance isn't accepted. REALLY! 27,600.00 for my WAL procedure. I think I will look into flying out of the country to have this done cheaper. It's a shame!

AZDee
on 9/10/15 2:55 pm - Gilbert, AZ

I was also given  $23K in CA to have surgery and my insurance says they cover but the amount they cover is laughable....I have a friend who had complete leg tumescent liposuction with a Dr. in San Antonio, who I was also planning on using to have a   long thigh lift, so I am waiting for a estimate from him, I am hoping it will be less than half...

 

tina_renee
on 8/2/16 1:53 pm

Careful, not alot of doctors can do this. Only a handful world wide. If the doctor performing the procedure messes up you end up getting bigger over time and not having fixed or halted the problem. Due to damaged deeper lymph.

 

Sometimes, you get what you pay for. And you can fight the insurance for re-imbursement due to medical ness. if you have all the i's dotted and t's crossed.

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