GREATER BOSTON LYMPHEDEMA NETWORK

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.

Dues are $20 annually, waived in cases of financial hardship. Anyone interested in being or staying on our mailing list, please send a check, made out to Greater Boston Lymphedema Network, to: Marianne Lynnworth, 77 Graymore Road, Waltham, MA 02451 USA or call (781) 894-2309.

What does the GBLN provide?

Monthly Meetings

Meetings are held at the Lahey Clinic in Burlington, MA. Generally we meet on the third Wednesday of each month, at 7:00 pm, skipping July, August and December. For speakers, we invite doctors or other professionals with training relevant to lymphedema. Meetings include 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.

A newsletter or notice is sent out one week before the meeting, stating the agenda for the coming meeting. The newsletter also gives a short report about the last meeting and relays other information of interest to lymphedema patients.

Phone Support

For further information, contact GBLN: tel: (781) 894-2309

Lymphedema Information package

Anyone contacting the GBLN may request an information package:

GBLN brochure
Updating list of Complete Decongestive Physiotherapy and Manual Lymph Drainage Treatment Centers and therapists
General lymphedema information
Additional lymphedema information as requested by the patient.

Additional Lymphedema Resources

National Lymphedema Organizations

National Lymphedema Network (NLN)
Latham Square
1611 Telegraph Avenue, Suite 1111
Oakland CA 94612-2138
1-800-541-3259
www.lymphnet.org

Lymphatic Research Foundation, Inc.
39 Pool Drive
Roslyn, NY 11576
516-625-9675
www.lymphaticresearch.org

Other New England Area Support Groups

Central MA Lymphedema Education and Resource Network, Inc. (Central MA LEARN)
PO Box 443
East Brookfield MA 01515
508-865-8987
EMail: CMLEARN2002@aol.com

Lymphedema Support Group at Bay State Medical Center, Springfield, Mass
Tel: 413-794-5432
Email: Tracie.Klekotka@bhs.org

Rhode Island Support Group
Hope Center for Cancer Support
Providence, RI
401-739-4984

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

Maine Lymphedema Network
RRI Box 259A
Penobscot ME 04476
Tel: 207-326-9656

Additional Links

Lymphedema International Network - offering education and support on the chronic effects of lymphedema.
Lymphedema Questionaire - compiling information on lymphedema clinics.
Lymphoedema Association of Australia - encourage research into lymphoedma and its treatment, spread information about the doctors, therapists and patients.
Lymphovenous Canada - lymphovenous and lymphedema: self-help groups, treatments, inspirational stories, health watch, links to other groups.
Delmar Physical Therapy Associates and Lymphedema Treatment Center - in New York
Dana-Farber pain and palliative care
Academy of Lymphatic Studies, Sebastian, Florida.