A decade has passed since I first reported on our survey of lymphedema patients. The objective of that study was to obtain a gauge of the information physicians were giving to patients with lymphedema and to understand some of the social issues that impact patients with lymphedema. The original survey came from a very interesting series of lectures and discussion at the Modern Concepts in Lymphedema conference in Dallas and the original survey results were presented in 2000. Since that time we have over 200 respondents to our online survey. While a decade has passed, it seems that very little has changed. In response to the question, “do you feel frustrated with a lack of progress in the treatment of lymphedema?” 84% of the people responding to this question replied “YES.” This is up from 69% in 2000.
Of greatest concern is that 94% of patients feel there is a serious lack of knowledge about lymphedema in the medical community, similar to the 97% reported in our survey in 2000. This suggests we have made very little progress in this area.
This is further substantiated by the fact that only 6% of patients felt that they got all the information they needed and only 19% felt that they received a reasonable amount of information. These figures compare to 0 and 33% respectively for those responding in 2000. Moreover, 73% reported that they received very little or no information. These results are almost identical to the 64% who reported that they receive little or no information in the survey from 2000.
With respect to the impact of lymphedma on daily life, 84% of patients felt sorrow due to the impact of lymphedema on their lives. This is up slightly from 81% in 2000.
However, most patients remain resilient despite suffering from lymphedema. They are positive with 94% encouraging and recommending that patients not isolate themselves just because of lymphedema and 91% indicating that they would not avoid people because they wear a compression sleeve. These results are similar to 100% in the 2000 survey.
As with the original study, there was some disagreement as to what to do when you are questioned concerning lymphedema by acquaintances and friends. About half felt that you should take this opportunity to discuss and educate people about lymphedema. This is higher than in 2000, where a third of those responding felt that discussing lymphedema with others was beneficial or the correct approach.
Dr. Reid's Corner
My conclusions in reviewing these results are similar to the conclusions in 2000. On the whole it appears that there is clearly a lack of knowledge about lymphedema on the part of doctors. While this continues to be a problem, there is more information available and this information is more accessible to patients. There is more reliable information available now than there was 10 years ago and there is more knowledge about the lymphatic system and the changes that occur during lymphedema. As in the 2000, 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 an amazing number of interesting and insightful comments and observations. I am including some of those responses below. The survey is available here if you wish to participate.
Tony Reid MD Ph.D
"I feel that I have to educate my doctor on lymphedema and it is a never ending battle. There needs to be more information out for us to give the doctors and then follow up to see if they read the info."
"It is unbelievable at how many doctors don't even know what this condition is, let alone how to treat it. The ignorance is the most frustrating part."
"I am so very proud that I am alive, I will talk to anyone anytime about this."
"The more I research LE on the net and talk to people who have been misdiagnosed I get more angry with the ignorance I find."
"It will allways be a constant concern for you. But with proper care and knowledge you can manage this condition. Thats the key element for patients with this problem."
What is your advice to others?
"Get help and get it soon. Don't stop until you find a doctor or Physical therapist who knows what you are talking about. Educate yourself by reading and asking questions and don't wait so long till infections appear."
"Take the opportunity to educate others! It's nothing to be ashamed of - embarrassed maybe, but not ashamed. Explain what lymphedema is so that others are not in the dark."
"We need to keep hope that soon there will be a better treatment or better yet a cure! There is more info and hope now than 5 years ago."
"It doesen't hurt to explain, and it may make you feel better and help someone else."
"It (lymphedema) is lifelong and progressive it isolates you. You are the one to live with it and take the flack of others who don't understand. Though it's hard, you have to be an activist even when all you want to do is lay in bed and cry."
"You should function as normally as possible. If cancer did not stop you, certainly you should not let lymphedema do that."