Living Boldly With Lymphedema and Lipedema

Born2lbfat Community Member
  • Editor’s Note: Sarah Bramblette is the first-place winner of HealthCentral’s Live Bold, Live Now Photo Contest. This is her story.

     

    Since this story was written, Live Bold contest winner Sarah Bramblette was featured on the hit television show The Doctors. We encourage you to view her segment to understand more facts about Lipedema.

     


     

    I have been affected by obesity my entire life. My obesity is based on body mass index. However, I never suffered metabolic effects from my excess weight. There are three dimensions of obesity: weight, metabolic disease, and body image. My highest known weight was 502 lbs., but much of that excess weight was due to Lipedema and Lymphedema.

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    Understanding Lymphedema and Lipedema

     

    I was diagnosed with Lymphedema in 2001, which is characterized by excess leaking fluid underneath the skin that causes arms, legs, or other body parts to become swollen, also known as edema. It took nearly two years to get a proper diagnosis and treatment. The reason? Doctors were blinded by bias, and blamed my weight for the problem, rather than a medical condition.

     

    After undergoing roux-en-y gastric bypass in 2003, I lost significantly more weight above the waist than in my lower body. I was an active member on ObesityHelp.com and had met another Lymphedema and RNY patient who told me she had Lipedema. It sounded like what I was experiencing. In 2004, after moving to a new city and seeing a new Lymphedema specialist, I was officially diagnosed with Lipedema, which is a condition affecting fat cells in the body, particularly the legs and buttock.

     

    The reality is I was born with Lipedema. I can look back at childhood pictures and see the difference in size between my lower body and my upper body. I always believed there was something different about me, as I never felt fat, or perhaps because I never fit the stereotypes. Of course, stereotypes are rarely accurate—that is the problem. I was never lazy; I ate the same as my siblings and friends; I rode bikes and played outside same as them. Yet, I always weighed more and progressively gained weight each year.

     

    Taking Control of My Health

     

    In my early 20s the excess weight and lymphedema really began to impact my mobility and complications, such as recurrent cellulitis, landed me in the hospital requiring IV antibiotics. I was scared for my life, and so were others. My best friend expressed her concern for my health. I had never let my weight affect my life; I had become a master at accommodating my life to my size. But once it was affecting my health, I was scared and I wanted help.

     

    I found I had to help myself. The first doctor I saw for help simply said my legs were “because of your weight,” yet did not have a scale to weigh me nor proposed any help for losing weight. On the next visit I asked for physical therapy. It was at therapy that I began walking in the pool and discovered water aerobics. Being in the water was pure freedom for me. I could do more exercise in the pool than I could ever do on land.

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    In addition to exercising in the pool, I began treatment for my lymphedema with a compression pump and receiving manual lymph drainage and compression wrapping by a physical therapist. The treatment presented many struggles: physically, mentally, and emotionally.

     

    Physically, the compression pump and wrapping were both painful and inhibiting. Spending hours tethered to a pump was mentally difficult, as was trying to be mobile with my legs wrapped from toe to groin like a mummy. It was difficult to find shoes and pants I could wear when wrapped.  In order to be effective, compression wrapping needs to be consistent, which means initially I was wrapped 24/7. I would go to therapy three times a week, only able to sink in a bath in between appointments. It made working and going to school very challenging. My quality of life was greatly impacted. I also continued to battle cellulitis and hospitalizations during this time.

     

    Emotionally, having a diagnosis gave me hope that I could improve my health, and that the excess weight was not my fault. However, it was also difficult to accept, since much of the weight was due to Lipedema, so no amount of diet or exercise would ever result in me being a normal weight. But Lipedema is an explanation, not an excuse. Just because diet and exercise were not going to result in weight loss, did not mean I did not need to live a healthy lifestyle.

     

    Seeing the Positive

     

    My family, friends, co-workers and classmates were very supportive of me. Even if someone did not fully understand the condition, they at least recognized I was suffering with a medical condition and, more importantly, I was doing my best to get treatment and improve my situation in life. While I do encounter negativity from strangers, overall the amount of positive support outweighs the negative.

     

    Actually, I see my weight as a great benefit in meeting new people.  I do not want anyone in my life who would judge me because of my weight. The people who take the time to see past my surface appearance get the benefit of knowing me and my story, and in exchange I get to know them and their story.

     

    Making a Difference

     

    Once the initial treatment ended and I was in a maintenance phase, the most challenging aspect of living with Lipedema and Lymphedema was access to health care. Insurance coverage for enough treatment sessions and compression garments has always been a battle. Although, it is a battle I have learned to win with each new insurance company I have encountered.

     

    However, policies are constantly changing. That is why I’m advocating for passage of the Lymphedema Treatment Act. The other challenge is weight bias and stigma I encounter in seeking medical treatment. I have experienced doctors who do not believe or accept that my weight is caused by other factors. I joined the Obesity Action Coalition because of their advocacy efforts and stance against weight bias and stigma.

     

    In the decade since being diagnosed with Lipedema, I have had to learn to balance my need to live a healthy life with my need to live a meaningful life. That might mean I do not wear my garments every day, because my legs need some freedom and comfort instead of restriction. I have learned to be persistent with advocating for my health care needs. My personal experience navigating the healthcare and insurance system lead me to pursue a career in health care. In addition to my advocacy initiatives, I am currently working on a master’s in Health Law and hope to continue making a difference for others. 

Published On: September 17, 2014
12 Comments
  • My Bariatric Life
    Health Guide
    Oct. 01, 2014

    You are truly an inspiration to all who suffer with obesity, no matter what the cause. I love, love, love that you have learned to advocate for yourself in the face of weight bias that affects treatment and insurance coverage. And I am impressed that you are seeking a degree in health law. Please keep us apprised of your continued successes! Keep up the great...

    RHMLucky777

    Read More

    You are truly an inspiration to all who suffer with obesity, no matter what the cause. I love, love, love that you have learned to advocate for yourself in the face of weight bias that affects treatment and insurance coverage. And I am impressed that you are seeking a degree in health law. Please keep us apprised of your continued successes! Keep up the great work! Many blessings to you!

     

    MBL

  • shughes
    Mar. 29, 2016
    I too understand the trauma with Lymphedema. My husband suffer from this disease. His disease went untreated for years because of lack of insurance. Yes we went to County hospital, but the garment compression was too expensive to purchase. So this disease went untreated for years until he was approved for his disability. But yet no help. I never thought in...
    RHMLucky777
    Read More
    I too understand the trauma with Lymphedema. My husband suffer from this disease. His disease went untreated for years because of lack of insurance. Yes we went to County hospital, but the garment compression was too expensive to purchase. So this disease went untreated for years until he was approved for his disability. But yet no help. I never thought in the medical field Lymphedema wouldn't get no help. We need help with garment compassion. The insurance company will not cover the garments that he need to treat the condition. Thanks, Concern Wife
  • Kla1019
    Mar. 31, 2015
    I'm 26 years old and I'm legally blind and I also live with LE and my doctors sent me to the hospital back in August of 2011! I have a struggle with obesity too! I was a normal child to the best of my abilities! I had miner swelling at age 15 and I was 19 when I figured out something wasn't right! I was not officially diagnosed till I was 22 and by then I had...
    RHMLucky777
    Read More
    I'm 26 years old and I'm legally blind and I also live with LE and my doctors sent me to the hospital back in August of 2011! I have a struggle with obesity too! I was a normal child to the best of my abilities! I had miner swelling at age 15 and I was 19 when I figured out something wasn't right! I was not officially diagnosed till I was 22 and by then I had gone years without treatment! My woundcare doctor tried to get me help for my LE but the insurance wouldn't cover the treatments! I can't afford to pay out of pocket and those compression raps are crazy expensive! I am not sure how big around my legs are but it is scary because I have got on the net and I learned stuff the doctors didn't tell me! I have never heard of LE till I wound up with it myself! I'm the only one in my family that is a lympher!
    • My Bariatric Life
      Health Guide
      Jun. 14, 2015
      Thank you for sharing your story. I wish you a world of hope in living with LE. Many blessings, MBL
  • jradocc@optonline.net
    Mar. 15, 2015
    Which Doctor is most knowledgeable to diagnose lipedema as opposed to lympedema. And is liposuction a good source of reduction of fat if you have lipedema?
    • Born2lbfat
      Mar. 18, 2015
      That is one of the challenges, there is no specific medical specialty that treats lipedema. Often finding a lymphedema clinic or vascular doctor is the best option, but still possible they will not be knowledgeable. You can check the directory on the http://fatdisorders.org/ website.
    • vsrdtt
      Jun. 09, 2015
      I really like Dr. Karen Herbst at the University of Arizona in Tucson. She is a researcher is adipose tissue disorders. She will see patients and diagnose patients, then she sends all of her recommendations to your personal physician. It is my understanding liposuction is the only known curative treatment for lipedema. Good Luck!
    • Born2lbfat
      Jun. 09, 2015
      I have met Dr. Herbst several times. She is wonderful and caring. Liposuction is a treatment, not a cure, there cannot be a cure for Lipedema until the cause is known.
    • My Bariatric Life
      Health Guide
      Jun. 14, 2015
      Thank you both for weighing in with your recommendations for a physician. Its always very helpful to hear from other patients, not only on their experience, but also on which doctors have helped them! I encourage the OP to seek more personal referrals and find the doctor that works best for her needs and personality. MBL
  • Kay69
    Feb. 11, 2015
    I going through same thing and I suffer depression from this there no winning or loosing battle with this wraps only work so long there no cure for this my doctor though I was eating to much but that wasn't the case so I was sent to cleaved Ohio at Cleveland clinic had the gastric y bypass because it was pushed by my family dr yes I lost 250 pounds but the...
    RHMLucky777
    Read More
    I going through same thing and I suffer depression from this there no winning or loosing battle with this wraps only work so long there no cure for this my doctor though I was eating to much but that wasn't the case so I was sent to cleaved Ohio at Cleveland clinic had the gastric y bypass because it was pushed by my family dr yes I lost 250 pounds but the fluids came back so he said I gave up which I didnt so it always been struggle so this past month he finally it in my family jeans because I had go to heart clinic because all the weight I loss caused my lower heart to weaken so I'm not sure what else to do any ideals
    • Born2lbfat
      Mar. 18, 2015
      Great news! There is a lymphedema/lipedema doctor at Cleveland Clinic. John Bartholomew, MD http://my.clevelandclinic.org/staff_directory/staff_display?doctorid=998
  • wickedstepmama
    Oct. 03, 2014

    Aside from personal aspirations, your story is my story almost exactly.  I was so happy to see there is someone else in my shoes who can actually express what I couldn't.  I have had such a hard time explaining these dreadful diseases, even to people who work in health care, that I am going to be making copies of story.  I will be immediately...

    RHMLucky777

    Read More

    Aside from personal aspirations, your story is my story almost exactly.  I was so happy to see there is someone else in my shoes who can actually express what I couldn't.  I have had such a hard time explaining these dreadful diseases, even to people who work in health care, that I am going to be making copies of story.  I will be immediately giving one to my family doctor, and my surgeon.  I have been waiting to get out a tumor, but because my lymph nodes in my groin are blocked, I have gained a lot of abdominal fluid causing me to become type 2 diabetic.  My surgeon won't do surgery until my sugar levels are under control, and I wish he would understand that the tumor blocking my abdominal flow is the culprit in the sudden onset of diabetes, and once removed I should be back to my abnormal normal self.  Anyways, thank you for the wonderful article!