What is Lymphedema?

Lymphedema is the accumulation of lymph fluid causing swelling of arm(s), leg(s) and/or other areas of the body. It occurs when the lymphatic system is impaired, especially when lymph nodes are blocked, damaged or removed as part of cancer treatment.

Types of Lymphedema

Lymphedema can be primary or secondary. Primary lymphedema has no known cause. Primary lymphedema can appear at birth, puberty, or later and most commonly involves one or both lower extremities. Secondary lymphedema is often caused by surgery, chemotherapy, radiation, but can result from infection, trauma or filariasis. Filariasis, common in certain subtropical and tropical regions of the world, is a parasitic disease caused by mosquito bites.

Is Treatment Available?

Treatments that reduce swelling, discomfort and risk of infection are available. Currently, the treatment of choice for many members is Complete Decongestive Physiotherapy (CDP). Without treatment the risks of infection and secondary complications increase which can be disabling and even life threatening.

What is GBLN?

The Greater Boston Lymphedema Network (formerly the Lymphedema Support Group of the Greater Boston Area) has held meetings since January 1995. It was founded and organized by Marianne Lynnworth, Dr.rer.nat., who has primary lymphedema and lipedema. In May 1998 a Board of Directors was established to facilitate the growing needs of the organization.

The original purpose of the group has been to supply some personal support and information to lymphedema patients. The complaint most frequently heard from new members is the lack of understanding and empathy by members of the medical profession. We have created a network of lymphedema friends who try to help each other by sharing information and maintenance advice. Members who have already lived with lymphedema for many years can calm down the fears of other members who are newly confronted with this affliction.

The GBLN is now comprised of patients, family members as well as health care professionals. Our group continues to provide support, information and advocacy in the hope of improving the quality of life for those with lymphedema.

You may try to reach the GBLN via postal mail at Greater Boston Lymphedema Network, to: GBLN, 39 Pond Street, Belmont MA 02478 USA.

What does the GBLN provide?


For many years, meetings were held on a regular basis, either at people's homes or a year at the Lahey Clinic in Burlington, Massachusetts. The GBLN invited doctors or other professionals with training relevant to lymphedema. Meetings included patient sharing, exchange of lymphedema information and presentations by health care professionals with training relating to lymphedema. In the past, we have covered: Manual Lymph Drainage, Exercises, Myofascial Release, Complete Decongestive Therapy, Skin care, Fitting of Compression garments, Nutrition, Lymphedema review, Bandaging, Manual Self-Care and Coverage by Insurances and HMOs.


In the earlier years of the GBLN, a newsletter or notice was sent out one week before meetings to announce the agenda etc.

Contact / Phone Support

Volunteer needed! If you are willing and able to provide phone support, please contact Ann through the contact-link at the bottom of this page.

Resources, Therapists near Boston

Here is a list of Complete Decongestive Physiotherapy ("CDP") / Manual Lymph Drainage ("MLD") Treatment Options for Lymphedema Patients in New England.

Additional Lymphedema Resources

National Lymphedema Organizations

National Lymphedema Network (NLN)
Latham Square
1611 Telegraph Avenue, Suite 1111
Oakland CA 94612-2138
Lymphatic Education & Research Network
261 Madison Avenue, 9th Floor
New York NY 10016
United States
Tel: 516-625-9675

Other New England Area Support Groups

Lymphedema Support Group at Baystate Medical Center, Springfield, Mass
Tel: 403-794-115

Rhode Island Support Group
Hope Center for Cancer Support
Providence, RI

Southern New Hampshire Lymphedema Support Group
Southern New Hampshire Rehabilitation Center
Nashua NH
Tel: 603-577-8400

Maine Lymphedema Network
Contact: Maire France Browning PT
Maine Coast Memorial Hospital Rehab Dept.
Tel: 207-667-5311

Additional Links

Related Reading

Coping with Lymphedema
Joan Swirsky, RN & Diane Sackette Nannery

Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing
Jeanne Burt & Gwen WHite, P.T. Lymphedema: Results from a Workshop - ACS
Jeanne Petrek, MD, Peter L. Pressman, MD, Robert A. Smith, PhD

A Child Apart
Juanita McDonald

Treatment Options

See also: results of our Pump Survey of Members of the Greater Boston Lymphedema Support Group, conducted in the Spring of 1997 by Marianne Lynnworth.

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