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Living With Lymphedema

Information, helpful tips, and news items of interest relating to lymphedema.

A Table of Contents
Easy Access to these informative Lymph Notes articles. <more...>
An "APP" to Locate Lymphedema Treatment
The American Lymphedema Framework Project (ALFP) is available, without charge, a computer application that enables individuals to locate treatment by specialty or location.

To download this "app" go to www.alfp.org

Here you will find these three catagories:

  • Specialist Directory,
  • Search by Location. and
  • More Information

If you have questions about this, you can contact the ALFP  by e-mail at alfp@missouri.edu.

Cellulitis is Serious
Cellulitis is a serious localized, or wide spread (diffuse), bacterial infection that may develop very rapidly in tissues affected by lymphedema.

Normal healthy skin protects these tissues and prevents such infections; however in tissues affected by lymphedema, even a minor break in the skin (such as either an insect bite or a paper cut) can allow bacteria to enter the underlying tissues. These bacteria can spread rapidly and create a life-threatening infection.

Coping Emotionally with Lymphedema
This article contains a brief excerpt from the book "Overcoming the Emotional Challenges of Lymphedema" by Elizabeth McMahon PhD.

Dr. McMahon is an experienced clinical psychologist and, in this book, she helps the reader recognize responses to the lymphedema that are normal -- in contrast to those responses that are problematic.

In addition to this helpful information, Dr. McMcahon provides practical suggestions and helpful worksheets to assist the reader in overcoming emotional problems associated with having lymphedema.   

Emergency Weather Preparedness
Weather events, such as a major storm, hurricane, or flood can force residents to leave their homes with little warning. 

Local officials usually publish a list of recommended items to have ready in case you must evacuate; however those with lymphedema, have special needs to be prepared to cope with the management of this condition.

The following are basic suggestions; however, since each lymphedema patient has different needs, you should make a list (or better yet a kit) to meet your needs.

Exploring Lymph Notes Content
The goal of the article "Exploring Lymph Notes content," which is organized into categories is to introduce members and visitors to the broad range of content to be found here.

This content is organized into categories which you can explore either scientifically or randomly. There is so much to learn about the lymphatic system and lymphedema, that you can benefit by either exploring:

  • randomingly or in an organized manner by working your way through the table of contents or
  • by simply explore the content as it catches you attention. 
Fatigue Happens
For some individuals with lymphedema, fatigue is a major problem; however, there are ways you can learn to prevent, overcome, or work around this problem. <more...>
Free Lymphedema Identification Cards

If you have lymphedema, or are at risk of developing it, you should wear (or carry) some form of identification to alert emergency personnel in the event you are in an accident.

Lymphedema Alert Wallet cards are available, without charge, from Lymph Notes. To request your cards, just e-mail cards@lymphnotes.com. Be sure to include your name and mailing address so we can send your cards as quickly as possible!

Lymph Notes Search Function
The LYMPHEDEMA SEARCH FUNCTION enables you to search the Lymph Notes forums and to use Google for an Internet search. The link for these search functions is located in the footer of each page. <more...>
Lymphedema Advocacy Group
The Lymphedema Advocacy Group is a volunteer organization founded by Heather Ferguson to promote the passage of legislation to benefit financial support for the treatment of lymphedema.

To learn more, and to potentially become active, visit this website at www.LymphedemaTreatmentAct.org.

Lymphedema and Carpal Tunnel Syndrome
Carpal tunnel syndrome (CTS) most often affects individuals who perform repetitive motions of the hand and wrist such as keyboarding on a computer. 
  • Carpal tunnel syndrome occurs most often in people ranging in age from 30 to 60 years of age, and is more common in women than in men. Those with lymphedema of the arm may be more at risk for developing this problem.
  • Carpal tunnel syndrome is caused by pressure on the median nerve as it runs through the bones of the wrist.
  • This conditionthat leads to pain, numbness,tingling, weakness, or muscle damage in the hand and fingers.
  • Lymphedema can increase the risk of developing carpal tunnel syndrome and it influences treatment options.
  • Lymphedema can also complicate the chances of recovery.
Native Americans and the Treatment of Lymphedema
The healing ceremonies of Native Americans' may require modifications in order to protect those with lymphedema from the danger of infection.

The Native American Cancer Research website includes excellent lymphedema information and detailed instructions on how to make these necessary modifications.

Nordic Walking
Nordic Walking, which had its origin in Finland in 1997, and is becoming popular all over the world. This sport has special benefits for those with lymphedema and is a very enjoyable activity to share with a group. <more...>
Pain Management and Lymphedema
Pain is often a lingering aftermath of breast cancer treatment and it can also be an early warning sign of the onset of lymphedema. Once lymphedema develops, this pain can become a chronic problem. Discovering drug-free methods of controlling this pain are helpful. <more...>
Pets and Lymphedema
Having a pet, or pets, can be a great joy; however when you have lymphedema, there are some risks that you should be aware of, and precautions, that you should take. <more...>
Pregnancy and Primary Lymphedema
Doris Laing, CLT-LANA is an experienced lymphedema therapist and a contributor to the Lymph Notes book “Voices of Lymphema.” With special permission Doris has shared her experience in helping patients with primary lymphedema have a successful pregnancy despite having the lymphedema. <more...>
Proper Care of Finger and Toe Nails
Appropriate nail care is an extremely important for those with lymphedema that affects their extremities. This is essential because any damage to the nails, or the skin surrounding them, can cause painful problems and potentially serious infections. <more...>
Protecting Lymphedema Patients During Surgery
If you have lymphedema, and your require surgery, it is your responsibility to make certain that those involved in your treatment understand your specialized needs.

To aid you, LymphNotes.com invites you to copy this article and use it to help in raising the awareness of your surgical team.

Recommendations for Air Travel




Traveling by air can be a happy experience even if you have lymphedema, or if you are at risk of developing it.

No matter your status, if you have reason to believe that you are at risk of developing the importance is important to follow the guidelines listed here that will help to prevent this problem from developing. 


Safely Removing Unwanted Hair
Many Lymphedema therapists recommend that women with lower extremity lymphedema do not use leg waxing.  This article answers the question, Why not?” It also addresses other unwanted hair removal systems. <more...>
Secondary Lymphedema


Secondary lymphedema is a disorder that is caused by damage to the lymphatic system. Cancer is the largest single cause of this condition.

Stanford Study
Stay Out of HOT WATER!
For those with lymphedema, water is an excellent setting in which to enjoy healthy exercise; however as with all things, caution is important because too much heat produces vasodilation that increases the flow of fluid from the blood vessels and into the tissues.

For those with lymphedema, exposure to extreme heat for long periods of hot water is not recommended. However, there are many way to enjoy swimming and water exercises with appropriate cautions.

STOMP Out Lymphedema
Stomp Out lymphedema is a virtual walk/run event for NLN members.
  • It is designed to raise money for lymphedema education and awareness.
  • It is similar to other walk/run events; however, the difference is that it is not necessary for all participants to be in the same time and place.
  • The run/walk should take place before the end of May 2014. Learn more about how to participate in this fun event, go to www.lymphnet.org/events/stomp-out-lymphedema.
Sunscreen Labels
In order to help Americans reduce their risk of skin cancer and early aging, the U.S. Food and Drug Administration has implemented rules for sunscreen products. <more...>
Surgery Precautions
If you have lymphedema, or are at risk for lymphedema, you should take basic precautions to protect your self from having the "at risk" limb used for taking blood pressure, blood draw, or injections. This is the story of Emily P. Bees' adventure in protecting her at risk arm during surgery. We appreciate Emily's permission to share her story here. 

We also want to say THANK Peninsula Medical Company, and their staff who make these Lymphedema Alert wrist or ankle bands available without charge. Their work on this project is appreciated

Susan G. Komen
Susan G. Komen,  formerly know as "Susan G. Komen for the Cure," is a fund raising organization that awards grants for research and treatment relating to breast cancer.
Frequently asked question about this organization include, Does this foundation support lymphedema research or treatment? The answers to these questions are “NO” and “YES.” <more...>
Tattoos and Lymphedema
There are some situation, such as recreating the illusion of a nipple  on a breast after cancer surgery, in which tattooing may be considered to be medically necessary. 

In contrast when a patient wants to add a decorative tattoo on tissues that are affected by lymphedema -- this may be create an unnecessary risk of infection. 

When a decision of this seriousness must be made, great caution should be taken into consideration about the potential side effects.

The Lymphedema Activist: Bob Weiss
Bob Weiss, is best known as the Lymphedema Activist. On his website www.lymphactivist.org he specializes in exploring, and answering, puzzling questions about Medicare with emphasis on the coverage of lymphedema treatment, <more...>
Hot weather can make life miserable for those with lymphedema. However, there are ways to reduce this discomfort.  Cassie, of StepupSpeakout.org  website, has generously shared some excellent cooling ideas with us.(www.stepupspeakout.org)Many thanks to Cassie for sharing! <more...>

Got a question or comment? Post in the 'Living With Lymphedema' forum.


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