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Welcome to the 10 Things Project site!  Here you’ll find concise, practical information for individuals with lymphedema, their families, and healthcare practitioners.

About

Our Purpose

While doing research on lymphedema following my diagnosis in mid-2016, particularly reading posts on Inspire (www.inspire.com), patterns began to emerge.  One of the most striking was how few physicians knew about lymphedema and how to diagnose and treat it.  I started looking into lymphedema education for physicians and what there was seemed overly wordy, and really boring to read!  In this day and age, shorter and more concise is better and more likely to be read.

During sessions with a counselor, we discussed the lack of education of physicians and she asked what I could do about it.  I realized with my healthcare and education background, I had the skill set to improve the lymphedema information flow and decided to launch the 10 Things LE Project, beginning with 10 Things I Want My Physician to Know About Lymphedema (LE).  I contacted several individuals on the Inspire site to help me.  Through emails and conference calls, we produced the first 10 Things in about 3 months.  You can find it under Resources on this site.

Next, we worked on 10 Things I’d  Like My Family and Friends to Know About Lymphedema (LE).  The project team also finalized 10 Things My Family and Friends Can Do to Support Me with My Lymphedema. Both lists appear on the Resources page.

The Project team now is working on three more lists, tentatively titled 10 Things I Wish I’d Known About Lymphedema (LE) at the Beginning,  10 Things My Certified Lymphedema Therapist (CLT) Taught Me About Lymphedema (LE), and 10 Things I Need to Know About Compression Garments for Lymphedema (LE).

There are lots of other topics that lend themselves to 10 Things LE as well.  Some we’ve thought about, but many we haven’t.  Do you have some ideas that you’d like to see us develop?

Please contact me on the Inspire site as DrBEP or via email at bepuetz@puetzconsulting.com

 

Call for Authors

We need volunteers to help with this site.  If you have a story or information to share, please let me know.  Feedback is welcome! Thank you.

 

Resources

This section of the site will feature the 10 Things developed by the group.   Each is initiated as a result of the group’s knowledge of and experience with lymphedema.  Once the list is developed, it is reviewed by a number of others, including physicians, Certified Lymphedema Therapists, and individuals with lymphedema.

The content of the 10 Things is copyrighted.  The content may NOT be changed without the express permission of the 10 Things Project Facilitator.  However, we encourage you to copy and disseminate the 10 Things documents.

Choose the version below that best meets your needs.

10 Things I Want My Physician to Know about Lymphedema
10 Things I’d Like My Family and Friends to Know about Lymphedema
10 Things My Family and Friends Can Do to Support Me with My Lymphedema
10 Things To Know When You Learn You Have Lymphedema
10 Things My Certified Lymphedema Therapist Taught Me About Lymphedema
10 Things To Know About Compression Garments for Lymphedema

Sources for Lymphedema (LE) Products/Garments/Supplies
Compiled by Joyce McMahon, 10 Things LE Project Team, April 2018
This list is for informational purposes only and not for the purpose of making recommendations or endorsing specific products.

Click on the name to be taken to the vendor’s website.

Garments/Supplies
Ames Walker
Bandages Plus
BrightLife Direct
Compression Guru
CompressionSale.com
Discount Surgical Stockings
ForYourLegs.com
Lymphedema Products.com
Vitality Medical

Garment Brands
Jobst
JoViPak
Juzo
Medi USA
Sigvaris

Healthcare providers and/or Certified Lymphedema Therapists (CLTs) may have additional specific sources of products.
You may want to ensure that the place of purchase is an authorized dealer of the product you are purchasing.

Pneumatic Compression Devices (Pumps)
Bio Compression Systems
Tactile Medical
Vitality Medical

Financial Assistance
Connie Cares
Marilyn Westbrook Garment Fund (email with questions)


Healthcare Abbreviations & Acronyms
Compiled by Joyce McMahon, 10 Things LE Project Team, May 2018

ABD
abdominal [abduction]
ADL
Activities of Daily Living
AWS
Axillary Web Syndrome
ACS
American Cancer Society
ALT
Aqua Lymphatic Therapy
ART
Active Release Technique
ARM
Axillary Reverse Mapping
BCBS
Blue Cross Blue Shield
BCRL
Breast Cancer Related Lymphedema
CDP
Complete Decongestive Physiotherapy
CDT
Complete Decongestive Therapy (alternatively known as Complete Decongestive Physiotherapy – CDP)
CFNP
Certified Family Nurse Practitioner
CLT
Certified Lymphedema Therapist (Physical Therapist); (alternatively known as Complex Lymphedema Therapy)
CLT-LANA
Certified Lymphedema Therapist-Lymphology Association of North America
CLWT
Certified Lymphedema and Wound Therapist
CNA
Certified Nurse’s Aide or Assistant
CPL
Chronic Progressive Lymphedema
CVI
Chronic Venous Insufficiency
DLT
Decongestive Lymphatic Therapy (also called Complete Decongestive Therapy – CDT)
DVT
Deep Vein Thrombosis
DX
Diagnosis
EDS
Ehlers-Danlos Syndrome
FMS
Functional Movement Specialist
HBP
High Blood Pressure
HNL
Head and Neck Lymphedema
HTN
Hypertension (high blood pressure)
ILWI
International Lymphedema Wound Training Institute
IDC
Invasive Ductal Carcinoma, also known as Infiltrating Ductal Carcinoma
IPC
Intermittent Pneumatic Compression for Lymphedema
IR
Interventional Radiologist
LAF
Lymphedema Awareness Foundation
LD
Lymphatic Disease
LE
Lymphedema
LE&RN
Lymphatic Education & Research Network
LI
Lipedema
LMT
Licensed Massage Therapist
LTA
Lymphedema Treatment Act
LVA
Lymphatico Venous Anastomosis (a method of directly connecting the lymphatic vessels in the affected area of the body to the tiny veins nearby)
LWCI
Lymphedema and Wound Care Institute
MLD
Manual Lymph Drainage
mmHg
A measure of pressure for compression garments
NCD
Non-Communicable Disease
NED
No evidence of disease
NHS
National Health Service (England)
NIH
National Institutes of Health
NLN
National Lymphedema Network
OMT
Osteopathic Manipulative Treatment
OTC
Over the Counter (ready to wear); see also OTS and RTW
OTS
Off The Shelf (ready to wear)
PA
Physician Assistant
PA-C
Physician Assistant-Certified
PAL
Physical Activity and Lymphedema
PCA
Patient Care Assistant
PCD
Pneumatic Compression Device (pump)
PCP
Primary Care Physician
PCT
Pneumatic Compression Therapy
PLE
Primary Lymphedema
PN
Peripheral Neuropathy
POTS
Postural Orthostatic Tachycardia Syndrome
PT
Physical Therapist
RIBP
Radiation Induced Brachial Plexopathy
RTW
Ready To Wear
SC
Sequential Circulator
SAPL
Suction Assisted Protein Lipectomy
SLD
Self Lymphatic Drainage
SLE
Secondary Lymphedema
TDC
Tissue Dielectric Constant
UA
Urinary analysis
UEFI
Upper Extremity Functional Index
VI
Venous Insufficiency
VLNT
Vascularized Lymph Node Transfer
WOE
Way of Eating

 

Our Stories

Project Team Stories

The following stories are written by the project facilitator, the project team, and others.  Each of us has lymphedema and we share our experiences from early symptoms, to diagnosis, to treatment, and day-to-day management.

Lisa Garcia

In 2014 I was diagnosed with endometrial cancer after a hysterectomy and then had 16 lymph nodes removed to determine the stage.  Cancer treatment included both chemo and radiation.  My lymphedema symptoms began on the day that I had surgery to remove my port in July of 2015.  That morning my ankle was swollen for …

Partners

Our Mission: The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded in 1998 to fight lymphatic diseases and lymphedema through education, research, and advocacy. With chapters throughout the world, LE&RN seeks to accelerate the prevention, treatment, and cure of these diseases while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic diseases, which include lymphedema and lipedema.

To accomplish these goals, LE&RN sponsors research fellowship grants, an international patient registry and biorepository, live-stream symposiums, the peer-reviewed journal Lymphatic Research & Biology, weekly e-newsletters, scholarship grants to lymphedema therapists, conference travel awards to young researchers, and a vibrant website with features such as Ask the Experts, connecting patients with the field’s renowned practitioners. LE&RN has State Chapters in the USA, as well as International Chapters. In 2016, LE&RN created World Lymphedema Day on March 6th, which was established by unanimous vote of the United States Senate.

Lymphatic Education & Research Network
261 Madison Avenue, 9th Floor
New York, NY 10016

The Lymphedema Advocacy Group is an all-volunteer organization of patients, caregivers, healthcare professionals and industry partners. Our primary objective at this time is improving insurance coverage for compression supplies through passage of the Lymphedema Treatment Act. Please visit our website, LymphedemaTreatmentAct.org, for more information and to learn how you can support passage of this federal bill.



Lymphedema Guru

The Lymphedema Guru is Joachim Zuther, who was trained extensively in lymphedema management beginning in 1984. Zuther founded the Department of Lymphology at the School for Physical Therapy in Ulm, Germany, in 1990, after he received his degree as a certified instructor for Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy (MLD/CDT) from the German Physical Therapy Association.

In 1994, Zuther formed the Academy of Lymphatic Studies, a school providing Lymphedema Therapy Certification courses based on the European curriculum in the Continental United States. In addition to courses held in the U.S. and Europe, he also taught classes in Asia and the Middle East. In August, 2004, Thieme Medical Publishers, New York, NY, published his Textbook for Comprehensive Lymphedema Management, which currently is in its 4th edition. Zuther is an active member of the International Society of Lymphology (ISL), the National Lymphedema Network (NLN), and the German Association of Lymphology (DGL). Zuther also is a founding member of the Lymphology Association of North America (LANA), and the North American Lymphedema Education Association (NALEA).

The Lymphedema Guru Facebook page provides daily information on all issues concerning lymphedema. facebook.com/LymphedemaGuru/

The Lymphedema Blog serves to distribute highly relevant and unbiased information about all aspects of lymphedema to members of the lymphedema community – those affected by lymphedema, their caregivers, therapists, physicians, and anyone whose life has been touched by lymphedema.

The Blog addresses all aspects of lymphedema including basic information, legislation, reimbursement, and treatment issues from a reputable source. The Blog also serves patients with a therapist finder and provides lymphedema therapists with a list of currently open positions. www.lymphedemablog.com


Leah Mahan Massage Therapy
4300 Bayou Blvd. Suite 22
Pensacola, FL 32503 • U.S.A.Leah Mahan, LMT, MLD/C
(850) 501-8062
FL Lic# MA30756
Est. Lic# MM19060

Leah Mahan has been a Licensed Massage Therapist since 1997 and has worked in a variety of venues including Chiropractic clinics, exclusive resort/spas, and now private practice.

In June 2015, she completed a course with the Academy of Lymphatic Studies and became Manual Lymph Drainage Certified. Leah specializes in addressing client concerns ranging from simple swelling/injury recovery to the maintenance of lymphedema.


LymphActivist

The Lymph Activist is Robert Weiss, a retired aerospace systems engineer with a Bachelor of Mechanical Engineering degree from City College of New York and a Master of Science degree from the University of California at Los Angeles. Weiss retired to learn about lymphedema and its treatment and to find informed medical care for his wife Pearl, then a 5-year survivor of breast cancer with lymphedema.

Weiss completed 80 hours of lymphedema therapy training with the Dr. Vodder School of North America (2003), is a graduate of the National Breast Cancer Coalition’s Project LEAD (2004) and Quality Care LEAD (2007), and the National Lymphedema Network’s Lymph Science Advocacy Program (2002 and 2004).

The purpose of the Lymph Activist website is to help patients with lymphedema and their therapists by keeping them informed. The content is both current and prospective, alerting readers not only of treatment and coverage status, but of upcoming changes and needs for the future.

The website subject matter addresses topics such as: pathologies of the lymphatic system and secondary sequelae such as cellulitis and carpal tunnel syndrome; radiotherapy, informed consent, and breast lymphedema; measurement, incidence, and prevalence of lymphedema; lymphedema treatment modalities; pneumatic sequential compression devices; cost-efficacy of lymphedema treatment; Medicare and insurance coverage or non-coverage of the treatment of lymphedema; billing and coding issues; claims denials and appeals; advocacy; and available patient resources.

The Lymph Activist site is solely supported by Weiss and does not accept contributions from any commercial enterprise.

LymphActivist Mission

Robert Weiss, M.S.
Independent Lymphedema Patient Advocate


Tactile Medical is a leader in developing and marketing at-home therapy devices that treat chronic swelling that results from diseases such as lymphedema and chronic venous insufficiency. Tactile Medical’s Mission is to help people suffering from chronic diseases live better and care for themselves at home. The Company’s unique offering includes advanced, clinically-proven pneumatic compression devices, such as the Flexitouch, as well as continuity of care services provided by a national network of product specialists and trainers, reimbursement experts, patient advocates, and clinicians. This combination of products and services ensures that tens of thousands of individuals annually receive the at-home treatment necessary to better manage their chronic diseases. Tactile Medical takes pride in the fact that our solutions help increase clinical efficacy, reduce overall healthcare costs, and improve the quality of life for individuals with chronic diseases.

Please visit us at tactilemedical.com


Founded in 1988, the National Lymphedema Network’s mission is to create awareness of lymphedema through education and to promote and support the availability of quality medical treatment for all individuals affected by lymphedema as well as those at risk for lymphedema.

The National Lymphedema Network (NLN) is dedicated to promoting lymphology as a medical specialty, promoting lymphedema education in medical schools, promoting therapists’ obtaining lymphedema training and certification; promoting research into the causes, prevention, and treatment of lymphedema; assisting patients with securing insurance coverage for medically necessary, safe, and effective lymphedema treatment; and expanding the quantity and geographical distribution of lymphedema treatment facilities and certified lymphedema therapists.

The NLN strives to do its part in making the world a better place by positively influencing the community in which it can make a meaningful difference.

National Lymphedema Network
411 Lafayette Street
6th floor
New York, NY 10003
646-722-7410
nln@lymphnet.org
www.lymphnet.org


Klose Training offers world-renowned continuing education courses for physical, occupational, and qualified massage therapists. We offer excellent opportunities to advance your lymphedema treatment skills, acquire knowledge of new therapy techniques, network with other experienced therapists, and earn continuing education credits – including for LANA recertification.

Our Lymphedema Therapy Certification is the highest-quality course available and includes the most comprehensive post-graduate resources. Klose Training’s instructors are the most experienced in the field. All are LANA-Certified and continue to work as full-time practitioners. Our medical director, Kathleen Francis, MD, one of the few physicians in the U.S. specializing in lymphedema, provides a unique and comprehensive lymphedema lecture as part of our lymphedema therapy curriculum.

Our Breast Cancer Rehabilitation course receives rave reviews. Our convenient online courses are video-based and rich in animation and graphics.
From the moment we first hear from you, you will receive friendly, individual attention. That personal touch continues through your initial training and extends throughout your career including help with difficult-to-treat patients.

Klose Training was established by Guenter Klose, the only MLD/CDT Instructor certified by the Physical Therapy Association of Germany (Verband Physicalische Therapie) actively teaching in the United States. Guenter was trained in Complete Decongestive Therapy at the world-renowned Foeldi Clinic in Germany in 1984. His extensive experience and his ongoing relationship with the progressive and creative therapists and physicians at the Foeldi Clinic guarantee the most up-to-date and effective treatment information.

We look forward to welcoming you or a colleague to one of our courses soon. Feel free to contact us with questions at any time.

Klose Training
klosetraining.com
info@klosetraining.com
303-245-0333


After working in the compression world for many years as a representative for one of the major manufacturers of compression products, our founder started CompressionGuru.com because of his perception that buying compression products was far too difficult for most people. The goal of Compression Guru is to make compression shopping as easy as possible. Compression Guru offers helpful descriptions, friendly and knowledgeable customer service agents, fast free shipping, low price guarantees, and a 100% satisfaction guarantee. At Compression Guru we will do everything to ensure that your experience is a great one and that you will find the best compression products for your needs.

We also now have Bandage Guru, founded to be the online bandage expert, to make shopping for bandages easier to find products that are right for you. Live help, detailed measuring guides, a huge selection, and lots of information make it simple to find the bandaging products that work for you.

Please call us at 888-550-2709 or email us at support@compressionguru.com.


Wear Ease, Inc. designs products to meet the needs of women in all phases of recovery from breast/chest, abdominal, and back surgery and related side effects such as lymphedema and limited mobility. We offer a complete product line of post-surgical and therapeutic compression garments. We have created these garments with the working knowledge of fitters, health professionals, and patients. We focus on providing garments that are supportive and comfortable enough to be worn around the clock.

Our goal is to provide attractive and comfortable products that ensure 100% compliance. Our company is a certified “woman owned business.” All products are proudly designed and made by women, for women, in the USA. As a smaller company, we can offer personalized attention to all our customers. Our simple structure enables us to provide unforgettable service.

Contact info:
www.wearease.com
Email: info@wearease.com
Phone: 866-251-0076