International Lymphatic Disease and Lymphedema Patient Registry & Biorepository

LE&RN, in partnership with Stanford University, has established the International Lymphatic Disease and Lymphedema Patient Registry and Biorepository to collect information about individuals diagnosed with a lymphatic disease. Please consider participating in this important project to support research that may lead to preventing and curing lymphedema. For more information see the project website: https://lernregistry.stanford.edu/

Ann Ehrlich, founder of Lymph Notes, author of Living Well With Lymphedema and many other books, died on June 3, 2017. See her obituary for more information.

The family requests that in lieu of flowers, friends honor Ann by contributing to the lymphedema scholarships through The Royalty Fund administered by Triangle Community Foundation. Memorial gifts may be made online through the Foundation’s website at http://trianglecf.org/donate/, or mailed to Triangle Community Foundation, P.O. Box 12729, Durham, NC 27709.

May her memory be for blessing.

ARE YOU NEW TO LYMPH NOTES?

• Begin by reading the news on the home page.
• Explore the many features available here.
• There are over 50 informative articles posted on this site!
  To locate the articles of greatest interest to you, click on A Table of Contents. This will cause a list of the articles will appear.
  To read an article, just click on it's title.
• To locate a specific forum topic, go to the orange bar near the top of the page and click on the heading "Lymph Notes Forums." This will take you to the forum page and you can search there.
• To locate the definition of a medical term, go to the Lymphedema Glossary.
  This heading aids you in searching terms in alphabetical order.
• The Rotator Picture in the upper right corner of the home page leads you to an interesting patient story. To read a story, just click a rotator picture title.
  To enjoy the next story, click on the next photo link and that story will appear.

HELPFUL BOOKS FROM LYMPH NOTES

Lymphedema and Lipedema Nutrition Guide

Learn how better nutrition can improve your symptoms and reduce pain. List price for the paper version has been reduced, order now from your favorite bookstore, Amazon.com, Amazon Canada, Amazon UK, or Barnes and Noble (ISBN 978-0976480686). E-books are available from Amazon.com, Amazon Australia, Amazon Canada, Amazon UK, or Apple iBooks (ISBN 978-0976480693).

Living Well with Lymphedema by A. Ehrlich, MA, A. Harrewijn PT, CLT-LANA, and E. McMahon PhD. “The most comprehensive lymphedema book on the market. It is wonderful for patients and for those at risk. So many sources tell lymphedema patients what they can not do. This book encourages us in what we can do!" Order from your favorite bookstore, Amazon.com, Amazon Canada, Amazon UK, or Barnes and Noble (ISBN 978-0-9764806-1-7).
  

Lymphedema Caregiver’s Guide is the first book specifically for family, friends, and professionals who provide, or arrange for, lymphedema home care. Written by Mary Kathleen Kearse, PT, CLT-LANA (an experienced and highly qualified lymphedema therapist), Elizabeth McMahon, PhD (a clinical psychologist), and Ann Ehrlich, (a professional medical writer). "This book covers all aspects of lymphedema home care including emotional support." Order from your favorite bookstore, Amazon.com, Amazon Canada, Amazon UK, or Barnes and Noble (ISBN 978-0-9764806-7-9).

Voices of Lymphedema is an exciting book written by patients, therapists, and others who know lymphedema first hand. As described by one of the many enthusiastic reviewers, "This is a must read book!" For more information and reviews (including those from the National Lymphedema Network (NLN) click here. Order in paper from your favorite bookstore, Amazon.com, Amazon Canada, Amazon UK, or Barnes and Noble (ISBN 978-0-9764806-5-5) or as an e-book from Amazon.com, Amazon Australia, Amazon Canada, Amazon UK, or Apple iBooks (ISBN 978-0-9764806-6-2).
  

Overcoming the Emotional Challenges of Lymphedema by Elizabeth McMahon PhD is an "Empowering and practical book, with exercises that the reader can jump right into and know they are taking steps to help themselves. I love the emphasis throughout the book that the patient is in control." Order from your favorite bookstore, Amazon.com, Amazon Canada, Amazon UK, or Barnes and Noble (ISBN 978-0-9764806-3-1).

New Lymphedema Treatements in Clinical Trials

Stanford is recruiting patients for two exciting clinical trials of new treatments for lymphedema:

• Drug treatment using a specific anti-inflammatory drug that appears to reverse some of the skin changes in lymphedema (see  https://clinicaltrials.gov/ct2/show/NCT02257970). Note: do not try this at home, the drug used in this trial is not marketed in the US and has different effects than most commonly used anti-inflammatory drugs (COX2 inhibitors) that can contribute to swelling.
• Surgical treatment for breast cancer related lymphedema using a bio-bridge to promote lymphatic vessel growth in combination with lymph node transfer. See https://clinicaltrials.gov/ct2/show/NCT02734979, Stanford news, and the press release.

See the Clinical Trials website for further details on criteria and contact information.

SPECIAL RESOURCES

• To access the information needed to protect yourself from the hazards of developing lymphedema, consult this article A Table of Contents. It lists the more than 50 articles that are available on this website.
  These articles provide information about lymphedema, the dangers associated with it, and solutions that an help you.
• Our article Vascularized Lymph Node Transfer (VLNTx) describes the surgical technique of transplanting lymph nodes from one place to another to improve the flow of lymph. On these forums, Lymph Notes members have shared their experiences and concerns about this new surgical technique.
• To locate lymphedema treatment resources go to http://www.alfp.org and download the American Lymphedema Framework Project app for your phone.
• The winners of the "Lymph Notes scholarships," which are being awarded to help ease the lymphedema therapist shortage, are announced on the www.lymphaticnetwork.org website.

© 2020 by Lymph Notes, all rights reserved.  This information does not replace the advice of a physician.

Updated: 2020-07-04