April 2000 Edition
This Lymphedema eNews is being generated through your request from our website.
I am amazed that another month has passed since the last edition of Lymphedema eNews. I have been very busy preparing for a presentation of my clinical research studies at the Oncology Society meetings next month, so it is nice to take a break and look over the many responses to last month's survey. 36 people responded and the results demonstrate that physicians have a long way to go to provide adequate information to patients concerning lymphedema. 31 of 32 patients who responded in the survey (97%) felt
frustration at the lack of knowledge about lymphedema in the medical community. I found it interesting that no one who responded to the survey felt they received all the information they needed concerning lymphedema from their physicians; however, 33% felt they received a reasonable amount of information and only 15% of patients got no information at all. In addition, several patients praised their doctors. While it is clear that much more education is necessary, it is also clear that many doctors and ther
apists are becoming more aware and concerned about lymphedema.
Tony Reid MD Ph.D
"I felt Sorrow at the enforced changes in my life."
"My lymphedema has not really altered my life activities, but it has made me self-conscious about the appearance of my arm. I wear a lot more long sleeved shirts."
"I am only 26 and am still active. It has really put a damper on things."
"I used to be a dancer, now I have difficulty lifting my leg in & out of a car."
"I felt helpless and not knowing what to do, no where to turn and out of control of my life, after cancer treatment. I was greatly relieved to know that i could control this disfiguring disorder"
"AT FIRST I DID NOT REALIZE THAT TREATMENT WAS A LIFE LONG COMMITMENT."
"Cancer itself is traumatic enough but now I am reminded of it everyday because of the lymphedema. I've been hospitalized twice because of infection and I know any one of these infections could be deadly for me and I sometimes get depressed but go on."
"Yes I did and imagine I always will! There is almost mourning over the loss of being "normal", of having a huge amount of spontaneity lost, of having to constantly be aware of this problem."
" have to get up earlier to get in the manual lymph drainage or the exercises for my leg. It takes extra time to dress because I have to put on the compression garment and fit the foam pad behind my knee to eliminate binding. Sometimes it goes right on, but sometimes I have to pull it down and start over again. After work I get to spend half an hour rerolling my bandages and another half hour bandaging my leg. This is after I drive home, change clothes and grab a bite to eat. If there is time and I don't fall asleep where I sit, I should do the massage (if I did exercises in the morning) or the exercises (if I did massage in the morning.) Thee are times when I wake up with my leg numb or a terrible pain in my foot so I have to pull off all the bandages and foam. I have a closet full of shoes I can't wear (especially the high heels) and a drawer full of jeans I can't wear because the right leg doesn't fit. Even on days I get a pair on, if I am on my feet for any length of time (like grocery shopping) before very long, the right leg is tight. I can't drive like I used to because my leg can't take being in that position for very long. It's a four hour drive to my mother's house and I haven't been up to see her since August because of the pain. It's very awkward to bandage every time I want to go someplace. You look like an easy victim in rest areas and shopping malls. Lymphedema has taken over my life in more ways than one."
"I felt frustration by the lack of information "
"The fact that some Doctors didn't even recognize it as lymphedema was frustrating. When I was told there was no cure and that was the end of the discussion on the Doctor's part. Little do the physicians realize how devastating it is to the patient to be told that there isn't a thing that can be done."
"Oh, do I ever AGREE! Actually, it's incredible. The ignorance is incredible to me."
"Every doctor I go to says that there is nothing they can do. I am trying to prevent the situation from getting worse when I get older."
"I can not believe that in this day and time that very few in the medical community know or lack of wanting to know about this condition. that is why i started a support group to help spread awareness to patients and medical community"
"While doctors seem to know the term lymphedema, they do not have an appreciation for the complications involved or the range of treatment options. I was told by a vascular specialist that I had lymphedema ( I already knew that) and that while it was "inconvenient" I should just get used to it. Also that it is in no way disabling or painful, just a problem with vanity."
"Physicians need to be better educated and need to talk to patient BEFORE the condition appears. If anyone mentioned it to me I sure missed the discussion."
"After having therapy from a good therapist last year, my life has turned around for me and have only had one arm infection since that time. I take daily antibiotics for maintenance and practice MLD, exercise and massage each and every day and use my day and night sleeves."
"I had a terrific GYN-Onc surgeon, who basically gave me straight odds on the risks, which I took."
What is your advice to others?
"You have enough troubles. Most people don't notice. At least you're not being pushed around in a wheel chair. We still have our arms and legs even they don't look like they fit us anymore."
"Educate yourself!!! There is treatment available and relief from the swelling and the pain. Don't let this get you down. Talk with other people until you get answers!!! Most people are very understanding of physical conditions and the rest don't even notice that you're wearing a compression garment."
"Because there is so little knowledge about this condition, I take their questions as an opportunity to educate and inform. People are not nosy - they are usually concerned."
"Develop a thick skin. Don't let other people's comments control your life. When I first developed lymphedema I was very self conscience when people would ask me in the grocery store, "What's the matter with your leg?". Now I figure it is their problem, and I ask them if they have any idea how incredibly rude they are being."
"If any patient doesn't want to talk about this condition my question is why, hiding won't change the condition but spreading the word will help the community to know what it is and that education, studies and research must all be done now to help stop and understand this condition."
"I think staying active and around people is the key thing anyone with a disability can do. There will always be those who blurt out tactless questions or who stare. They are not worth your attention. You are more than lymphedema, don't let it define you."
"I choose to give a brief reply and that satisfies most curiosities, without being rude."
"I am so happy to finally have a name for my disorder after (38+years) that I now am not ashamed to go out in public with my swollen extremities (I have bilateral lymphedema arms/legs. For most of my life I have felt robbed of my ability to be like other girls,embarrassed by swollen feet and legs not able to wear the latest fashions or be comfortable at concerts,etc. Now I understand what is happening and the precautions I need to take for my well being. I feel free to go do the things that I am capable of doing with limitations."
"there are lots worse things to deal with - just take a close look at other people - no one gets away with a free ride! Some just seem to be in a better place, but their conditions may be less obvious. EDUCATE THOSE OTHER FOLKS!!! At least daily I get the opportunity to educate someone about lymphedema. I take every opening to "spread the word", because even in health care there is a tremendous amount of ignorance."
One recurrent frustrating issue in the lymphedema community, is the lack of insurance coverage for effective treatment. Some insurance carriers either provide little benefits, restricted benefits or no benefits for MLD, bandages and/or compression garments.
Thank you to all the patients that have taken the time and had the courage to share their experiences in our Lymphedema Chronicles section.