March is Lymphedema Awareness Month

March is Lymphedema Awareness Month and I really wish I knew how to make people aware of lymphedema. I am sure my Facebook friends are sick of hearing about it already but I am hoping some people will mention it to other people and so on and so on…

I spent most of my life rarely mentioning Lymphedema. It was just something that I lived with. I have Primary Lymphedema and that means I got it through genetics (my father had it). I did not have cancer treatments, I did not have any major trauma and it is not because I am too fat (as a lot of television shows seem to suggest is the only cause for lymphedema). 4 of my sisters and 2 of my brothers have it as well and everyone seems to have it to varying degrees. Mine is considered the 2nd worst in my family. In my family we get it at puberty (well, we are born with it but we don’t really see it until puberty). Growing up, our doctor just called it having the Bellows (my maiden name) legs and we were not treated for it at all.

I always felt that having Primary Lymphedema was much better than having Secondary Lymphedema because at least I knew that there was a good chance that I had it so it was not a surprise when I did plus I had other family members who I could talk to about it. I can’t imagine how hard it must be for someone surviving cancer and then getting lymphedema because of the cancer treatments. Thankfully the awareness of this type of lymphedema has greatly increased and cancer patients seem to be getting a lot more info and  help with it than they used to.

I posted a photo of my legs on Facebook tonight as part of my Lymphedema Awareness Campaign. Until this past year very few people had ever seen my legs. This year I have showed them a lot. Yes, I wear long dresses and skirts so my legs are not the first thing people notice about me but if anyone asks me about Lymphedema I just show them my legs. I have seen a lot worst cases of Lymphedema than mine and I have seen a lot better ones too (and that is just in my own family lol).

Why is Lymphedema Awareness so important to me??? I am not sure. Yes, I have it but will awareness make a difference? I hope it will. I would love to go to a doctor and not have to explain it to them. I would love to wear a bathing suit or a shorter dress and not have people gasp at the size of my legs and make rude comments about them. I would love for people to understand that I know what I can and can not do and for them not to limit me because they feel that I can not do something. I would love for the insurance companies to understand that they should pay for treatment  because some people have had amazing results with treatment especially if they start early (I paid thousands of dollars out of my own pocket and was reimbursed $250 from my insurance company. My MLD treatment was not successful because I didn’t do it early enough and now my legs have too many crevices for the stockings to work and I felt that I couldn’t have a real life if I had to be bandaged from my toes to my belly 24/7). Maybe if the insurance would have paid then I would have gotten my treatment early enough to work but I guess I will never know and there is always hope that something will work for me. New treatments are being discovered.

I just hope that eventually, with Lymphedema Awareness, the lives of people with Lymphedema will be better….

P.S.  To any doctors out there: Yes it hurts. Some days are a lot worst than others (Many doctors believe that Lymphedema does not hurt…I have met them)

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18 thoughts on “March is Lymphedema Awareness Month

  1. I am one of the unfortunate individuals that fell victim to lymphedema. Lymphedema is a build up of fluid in the lymphatic system. It carries the waste material, dead cells, to be disposed of in your system. I was diagnosed with cancer back in 2008. The type is a Non- Hodgkin Lymphoma (mantel cell). Over the years I have had various problems as my immune system borders on something crawling over the ground, but at the end of 2013/2014 I had a tumor in my left groin. It was discussed and agreed that I would undergo 15 rounds of radiation therapy. I was to find out later that not enough research would lead to a problem, lymphedema. The radiation damaged a lymph node and at that point it can be a matter of time before the problems start. I was fortunate in that through my persistence I was able to add another great lymphodema specialist to my team. Over a five month period I had gained 50 pounds. Around October I was getting so frustrated with the additional weight and having to keep buying new cloths. Every size larger would get me that little bit more upset. And then in November 2014, with the use of a pressure unit, lymphedema specialist and a new chemo treatment, the weight started to come off, 30 pounds in three weeks. Two weeks ago I was close to getting back to normal when it started back in the other direction. The bad thing about lymphedema is that it will be with me until the end of my days even if the cancer was cured.

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  2. Karen, You are at the other end of the spectrum, what I have read about and I wish you all the best. You mentioned that you had a problem with your insurance company, what’s new? I must have got lucky. I talked with my oncologist over a three month period about my lymphedema problem and finally was able to obtain access to a great lymphedema specialist. I have a good idea where my blockage is and I am researching what I may be able to do in the future. Take a look at the Mayo. Again I wish you all the best mow and in the future.

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  3. I feel your pain I took a bad fall last year in May I think it happened when I fell on my leg don’t know if that triggered it or not but by July my legs started to get big and started to loose a lot of fluid mostly at night my sheets would have to come out of the bed . From my knees down I had to wear cold band bandages 24/7 for maybe 3 months continuously getting measurements weekly with great results. My Lymphedema nurse said I was lucky I got it in time . I couldn’t touch my legs tender to touch very painfull I would cry. now my legs are gone way down they aren’t out over my shoes now and the Dr. can’t get over them.I have to wear compression socks for the rest of my days but that I will live with. I am 61 and over weight but it was only after the fall on concreate that I came into contact with this . So yes I feel your HUGS hope you get treatment soon .

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  4. I’m so glad I stumbled across this blog. I have Primary Lymphedema as well and your story is VERY similar to mine. Just wanted to say a quick hello and thanks for writing.

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  5. I am a lymphedema therapist and I want you to know that with CDT, combined decongestive therapy (bandaging cupled with MLD), your legs can be reduced significantly. This would go on for 4-6 weeks after which you’d be measured for compression garments to maintain that fluid reduction. It is NOT too late.

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    1. Hi Rose, I have had that treatment with a Vodder trained therapist.. My swelling went down a little but then we could not find a stocking that would work because I have too many grooves in my legs and it kept cutting off my circulation. (and they had been measured very precisely and I tried many different types). My only option was to be bandaged forever and that wasn’t an option I wanted.

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  6. Hi there…thank you for including your picture…those were my legs about a year ago…I could not walk because the lymph fluid had moved into my ankles it was very painful…I had continuously gone to several doctors who I did point out my swelling…and was sent to get scans on my legs for blood clots (which I didn’t have) and not one person said anything about edema…I finally had to go into the ER because one night my leg started swelling so fast you could see it moving up my calf…I was scared…it was then that they referred me to a pulmonary doctor who immediately diagnosed me. He then arranged for an appointment with the Lymphedema clinic. Well there was a waiting period of 4 months until I could be seen, but when I got to start the therapy, it was such a great feeling…finally! After several months of wraps and water therapy…my legs look somewhat normal and I have a lot less pain….yes I have to wrap, but it is a lot better than the pain.

    My plea is for the doctors to learn more about lymphedema, so we can catch it earlier…It would make such a difference.

    Thank you for your story and allowing me this venue to comment.

    Sue

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  7. After having my lymph nodes cut to remove lymphoma in my left groin in 1996, I started with a small amount of swelling.in my feet. It got worse over time. My oncologist at the time said I had lymphedema and that is all he did about it. Then in 1999 I had a bad blood infection from a Groshon catheter and both my legs blew up. There was no help at the time to treat lymphedema in western NC. I did my own investigation and found a doctor and a facility in Charlotte and had amazing results. Even though my case is stage 1 in my right leg, and stage 2 in my left leg, I have to keep a close eye on my legs everyday. Since then I have been able to manage the swelling myself. The only time I need help with compression bandages is after each of my many hip surgeries (I have had 7 and due for another one this year). It took me a long time to figure out why I would get flare ups after each surgery. When you are in the hospital they always give you fluids. Those fluids are so full of sodium that it poses another bout of swelling. You are not allowed to bend forward for at least 3 months after every hip surgery, so I have to have a OT or PT come to my house 3 times a week for MLD and to wrap my legs. I am pleased to say that since my oncologist saw the good results in my legs, I am told that he no longer ignores the problem and he always refers his patients to get help with this terrible condition. I wish more doctors would learn about lymphedema and that there are treatment options for patients. The diagnosis of lymphedema is for life, and until a cure is found we need to be as verbal and outspoken as possible. I have also had a lumpectomy to remove breast cancer. Of course several lymph nodes we removed and luckily the nodes did not have cancer. This was done in 1992, and I am at risk to get lymphedema in my arm, but I diligently protect my arm constantly. Just beware if your lymph system has been compromised in any way you need to be sure that you do not ever get your blood pressure taken or have any kind of a needle stick in that limb…EVER! And do not let any uninformed or uneducated health professional tell you differently. The risk is for a lifetime.

    Thank you,
    Lorraine

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  8. I STARTED TO SWELL ON MY LEGS, THEN FEET, IT HURT TO WALK. NO DOCTOR KNEW WHAT IT IS? FINALLY, ONE SAID GO GET WRAPPED. IT HELPED, BUT IT COMES BACK. NO ONE STILL EVER SAID YOU FOR SURE HAVE LYMPHADEMA. IT HURTS MUST KEEP LEGS UP, I GAIN WEIGHT WEIGHT, THEN DOCTOR SAYS, WHY AREN”T YOU TRYING TO LOOSE WEIGHT. I JUST GIVE UP. NOT KNOWING WHAT IT IS FOR SURE. THEN NOT ONE DOCTOR CAN HELP ME. I PRAY WE ALL GET AN ANSWER. THANKS SO MUCH FOR HAVING THIS ON MY PAGE AMEN.

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  9. Hi Karen. I found your blog from the LEARN newsletter and am glad I did. Thanks so much for posting that leg photo and story. I have similar legs and problems. One doctor told me my legs were due to being fat. I have arthritis as well, so at least I can get some pain meds for that, since very few people believe me when I complain of leg pain. I’ve had good luck with Tubi-Grip bandages as compression socks, tho of course I have to buy my own at Amazon since insurance does not pay. They come in a roll and I cut them off to size and double them up for good compression. I’ll continue to follow your blog, and thanks again for posting!

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  10. Hi Karen, I love your blog. Keep up the good work. I also am happy that you said that Lymphedema hurts, it sure does and I can not stand listening to all the Doctors saying that it does not. I am American but living in Europe and doing all I can to change, educate and help other patients. I have secondary Lymphedema due to my Cancer operation, radiation treatment as well as afterloading. A friend of mine has primary Lymphedema which was not diagnosed until she was 23. So , we have a lot to do to change things for the better. Wishing you all the very best of things.

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  11. Hi Karen,
    First, thank you for starting the conversation about Lymphedema and having a site where people can share, discuss, and learn.

    I am a certified lymphatic therapist and medical exercise specialist in chronic disease/pain functional conditioning (Canada). I enjoy learning what is happening in the USA. I know you have a good resource network such as the National Lymphedema Network amongst others.

    Secondly, I am just curious if you have heard of / about kinesio taping for lymphedema? Might be something to look into as it allows for a way to self manage.

    Cheers,
    Francois

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    1. I live in Nova Scotia, Canada. (originally from Newfoundland)
      No, I have not heard of kinesio taping for lymphedema (I have heard about it for injuries – especially in athletes).

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      1. Hi Karen,
        Thanks for the update regards being in NS. I will check to see who might be doing kinesio tape for lymphedema there. My view on it, it is a great way to do self management with the tape.
        Francois

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    2. Taping is amazing and really helps me and others that I have told this about. If you have the chance to learn or have someone like Francois tape you then should go for it , it is worth a try !

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  12. Thank you Karen I too have legs like yours, yes primary Lympodema, as well as Lipodema, I have what they call Stage 4 Lipo/Lymphodema in many sections of my body, the legs & feet, and the upper arms now, I am so disfigured. Being a singer/songwriter performer this part of my life has gone, as no one wants to hear me as to them I look hideous. I too want to make Awareness, friends are putting on a Fundraiser for me in May, I am a well known identity in my area, so I hope all my friends & acquaintances will get behind the cause as well. Good on you once again, you have put the right words on the page thank you xxx jen

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