Lymphie Stories

Lymphie Stories: Kimber W.

Submitted by Kimber, August 2012.

I’m 24 years old and have had primary lymphedema in my lower left leg since I was about 10 years old. I wear compression stockings, use a pump and have tried wrapping and massage techniques in the past — but the swelling never budges (except by getting gradually worse over time). I also now experience a “pitting” swelling in my right ankle (which prompted me to start wearing compression garments on both legs) and occasional pain and swelling in my fingers.

For the first few years after I was diagnosed (only after my mom did tons of research), I wore my compression stocking daily but did not let my lymphedema slow me down. I went to the swimming pool with my friends, wore shorts to school and didn’t give my leg much thought. I’m not sure when it happened, but my outlook eventually shifted. By the end of high school, my leg never saw the light of day (except in front of family and a few close friends), and this continued through college. As it turns out, hiding my leg did much more damage than good, and my lymphedema became a huge source of anxiety for me. With my husband’s support, I bought a pair of shorts a couple of months ago and worked up the courage to wear them to an exercise class I regularly attend. I knew it was stupid to be so self-conscious, but I felt like I couldn’t control it. The first time I told some new friends about my lymphedema, I could see my kneecaps shaking! Since I stopped trying to hide my disorder, life has gotten infinitely easier; I feel more like my 10-year-old self.

As many of you know, the most frustrating aspect of having lymphedema is the lack of awareness. I live in a small, rural area, and most doctors I see don’t have a clue about what primary lymphedema is or how it affects the people who suffer from it. My best friend is in medical school and said she has learned very little about the lymphatic system. I periodically visit new doctors to see if I can garner any new information, but in the past 10 years, I haven’t found a doctor who knows more about this disease than I do.

I plan to make a trip to see a lymphedema specialist soon, and I’d like to try wrapping and massage again. Until then, I’ll do my best to treat my leg on my own — and feel lucky to be as healthy as I am.

Submit your story to the Lymphie Life! Use the contact form here to share your personal story of living with lymphedema, and, with your permission, it’ll be posted on the website.

14 comments on “Lymphie Stories: Kimber W.

  1. I don’t know if you are even close to Maryland but The Greater Baltimore Medical Center (GBMC) has a wonderful Center for Lymphedema. They have helped my daughter, Alexa, tremendously. They are caring, knowledgeable and devoted. Go on the GMBC’s website and find out more about them and maybe even acquire some new techniques or info that you may not have know before! You are very inspirational, Kimber, and your courage is to be applauded! Thank you for sharing:)

    • hey Doreen,
      i am also facing primary lymphedema and the problem is i am from India.
      Can you suggest me any specialist here… actually am really disappointed with the kind of treatment i am taking.

      • Hi Radhika,

        I have wondered if there were many therapists in Asia because it seems like people are having a hard time finding therapy near where you live.

        Good news! I found one in New Delhi:
        http://www.klosetraining.com/directories.asp

        I found this lymphologist from the International Society of Lymphology’s website:
        Bottengada Ponnappa India 927 K.J. Hospital-Post Graduate & Reasearch Center, Poonamallee High Road Madras 600 084, India

        Good luck, Radhika! I hope one of the therapists is able to help you!

        Best, Rosie

      • When you get to this website, Radhika, click on Therapists in India: http://www.klosetraining.com/directories.asp

        Also, I heard Dr. Gogia is one of the top Lymphedema doctors in India. His website is: http://www.amlamed.com

    • Hey Kimber, my name is Andrew; i had lymphedema since i was 20, i am now 25; i had the right and proper surgery last july 2012; its been almost 10 months and i am at awe for the results; if you’re interested to find out more, please email me at m a t t a . a n d r e w @ g m a i l . c o m

  2. Jim Miller

    Kimber – your story is, sadly, all too familiar. But yours is one of encouragement and promise. I’m so glad your husband has helped you get into some shorts. Life is “too short” (sorry for the pun) not to wear shorts and to heck with what people might think. As you said, “be 10 again!”. I hid my legs (primary LE in left leg since age 17; now in the right leg at age 63) through college and until I was 30! Then decided, like you, to just go with it. My wife today is a wonderful support – the best I have. Count your husband a blessing.
    As for the treatments, when you do find a LE therapist make sure they coach you on how to do your own manual lymph drainage massage and how to do your own wrapping. I do all my own, and it makes a big difference to be able to keep up with your treatments at home. But, there is always a need for an expert from time to time. I’m going into a new therapist in a few weeks for a “check up” and see if we can’t take my leg down another notch in size.
    Also stay in touch with others as with Alexa’s forum here.

    Jim Miller

  3. Sometimes my hands swell and hurt in the summer, and I have Primary Lymphedema, like you.

    I live in NYC, and not too many doctors know more than I do about LE, much like your experience, which proves that we’re the best advocates for ourselves.

    • Hello Rosie,

      I have primary LE in both lower limbs too. I am considering to have an lymph node transfer. I see that they also do it in NYC, also for people with primary LE. Maybe you have heard of it. Sometimes I have pain in my axilla both I have never had a swelling in the hands – till now. Do you have to wrap your hands as well? Or just the legs?

  4. Dear Kimber,

    Here is a link that will (hopefully!) help you find a therapist and doctor, respectively, in your area: http://lymphedemapeople.com/phpBB3/viewtopic.php?f=9&t=1719
    http://lymphedemapeople.com/phpBB3/viewtopic.php?f=25&t=5

    Best, Rosie

  5. My lymphedema is concentrated in both of my legs.

  6. Thank you, everyone, for your support and advice! I plan to check out some of these links and see what I can find near me. I’ve always had a hard time finding nearby doctors/therapists, but if I happen to find one — or make a trip somewhere — I want to learn some new techniques/treatments that I can take home.

    I just found this website a couple of months ago and it’s been a huge blessing. I’ve spent a lot of time going to doctors and searching the Internet thinking that I was somewhat alone with lymphedema that didn’t respond to treatments and other “strange” symptoms (like pain and swelling in my fingers in the past). It’s nice to find some people who understand! :)

  7. Wow, thanks for that inspiring story!! I too have primary lymphedema and only my close family and friends really know about it. I’ve tried to hide it as well, but when I was a kid I definitely used to wear shorts and played lots of sports. With that keep teasing and pointing and maybe that’s why I eventually tried to hide it and keep it to myself. I was just telling my husband that my new years goal this year is to tell more people about it and be more open (like maybe wearing shorts to spin class) because I realized that if I choose to hide it, I can’t really fault people for not knowing something is wrong or knowing much about lymphedema It’s hard to tell people, but I think it’s relieving too and makes your circle of friends bigger and stronger. Thanks so much for this!

  8. I am 55 and I have had this “unusual, no one knows what it is” swelling in one lower leg/ankle for about 5-6 years. NO ONE could tell me what it is until I went to an integrative doc who diagnosed Primary Lymphedema. These days, I think people wear all kind of clothing items to the gym or otherwise. I do not feel odd wearing compression socks out in public. Wish they made “cool” ones for legs like armsleeves. Does anyone know it there are some out there?

    • Nicole C

      Hi. I too have it in my left leg. I have to wear compression socks as soon as I wake in the morning. I hate how ugly they are too. I found that Juzo brand has a line called Dream and Dream 2000 I believe. They come in alot of bright Colors. Open and closed toe. And they will make them a tye-dye effect w white and maybe black too. Makes them a little cuter. Hope that helps.

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