"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
"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
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
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
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
"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
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
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
"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
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
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
"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
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
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,
"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
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
take for my well being. I feel free to go do the things that I am capable
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
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."
Dr. Reid's Corner
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 therapists are becoming more aware and concerned about lymphedema.
The questions that I put into the survey came up during a discussion at the conference on Modern Concepts in Lymphedema that was held in Dallas. 81% of those responding to the survey felt sorrow as a result of the enforced changes in their life and 69% felt frustrated with the lack of progress they felt at certain times during their treatment. However, everyone who responded felt that it was important to meet the challenge of lymphedema directly and not to become isolated from friends and loved ones. There was some disagreement as to what to do when you are questioned concerning lymphedema by acquaintances and friends. About a third of those responding felt that it was none of their business. However, about two thirds felt that you should take this opportunity to educate people about lymphedema.
On the whole it appears that there is clearly a lack of knowledge about lymphedema on the part of doctors and therapists but that this may be improving. Certainly, there is more reliable information available now than there was 5 years ago. The survey also indicates that those suffering from lymphedema are not sitting by and accepting this fate but instead are facing their problems and doing what is in their power to get more effective treatment and improve the awareness and understanding of lymphedema.
There were dozens of interesting comments and observations. I am including some of those responses below. Please feel free to comment on these responses. The survey is available on the home page of our website. Sincerely,