Friends of the National Lymphedema Network,


NLN has been quiet during the past year because we were transitioning to a new leadership team.

This team is now working on rebuilding NLN to better serve people who are at risk for lymphedema, those with lymphedema or lipedema, and medical professionals who are involved in their care.

Our plans include 1) an educational campaign on lymphedema risk reduction; 2) efforts to help people with signs or symptoms get diagnosed so they can be treated; and 3) rebuilding our website (which was compromised and rendered unusable) to better communicate with our community.

We ask for your continued patience and support during this transition. We regret that we will not be hosting the NLN National Conference in 2018, but we do plan to host events in 2019.

We greatly appreciate your contributions towards our efforts by way of membership renewals, donations, and volunteering. Please continue to support NLN by renewing your membership.

The Marilyn Westbrook Garment Fund (MWGF) continues to operate. If you would like to apply, volunteer to help, or donate to the fund please e-mail: nlngarmentfund@lymphnet.org.

We need photos, content editors, and reviewers to help with the new website. If you are interested in volunteering, please e-mail: nln@lymphnet.org.

Please trust that we remain devoted to our lymphedema community, and we look forward to reconnecting with you in meaningful ways. Thank you so much for all your support.

Sincerely,
NLN Board of Directors
Jeannette Zucker, Chuck Ehrlich, Steve Norton, Tom Kendall, Michael Cannon, Azish Filabi

 

About the National Lymphedema Network

Lymphedema is a common cardiovascular condition that can be disfiguring, disabling, and sometimes leads to fatal complications. National Lymphedema Network (NLN) is a nonprofit organization that has been working to help prevent, treat, and cure lymphedema since 1988.

NLN serves the entire lymphedema community including:

  • Consumers with—or at risk for—lymphedema, lipedema, phlebolymphedema, and related conditions to promote lymphedema risk reduction, diagnosis for those who have symptoms, and access treatment with an overall goal of helping them improve their quality of life and minimize the effects of their condition. NLN administers the Marilyn Westbrook Garment Fund (MWGF), a patient assistance program supported by donors and industry vendors.
  • Friends, family and caregivers assisting people with lymphedema by providing education and support.
  • Lymphedema therapists and other medical specialist who treat lymphedema by providing networking, education, recognition, and support.
  • Non-specialist medical professionals to help them connect their patients with the best available lymphedema treatment resources and minimize their patient's risk of lymphedema complications.
  • Researchers working on understanding the lymphatic system, treating, preventing, or curing lymphedema to help connect them with resources, sources of data, and research participants.
  • Training programs for medical professionals to help them connect with prospective students.
  • Vendors of lymphedema-related products and services to help them connect with potential customers.
  • Policy makers and legislative bodies to promote favorable reimbursement policies for lymphedema care, treatment devices, and care supplies.
  • Other professional organizations to help establish and promote best practice guidelines for lymphedema care.

What is Lymphedema?

Lymphedema is a cardiovascular disorder characterized by chronic edema or swelling in the skin. Normal swelling promotes healing and goes away after a few days. Chronic edema results when excess fluid is trapped in the tissues because lymphatic system drainage is overloaded or damaged.

The lymphatic system is a network of collecting vessels that removes excess tissue fluid, as well as providing many other functions. Lymphatic vessels in the skin are located near the arteries, veins, and capillaries of the blood circulatory system. Lymphatic collectors in the skin drain into larger lymphatic vessels and ultimately empty into the blood circulatory system.

Chronic edema prevents wound healing, causes degenerative skin changes, and promotes the growth of abnormal fat in affected areas. These areas are also prone to bacterial infections (cellulitis) that further damage the skin and can lead to life-threatening systemic infections (sepsis) if not treated promptly and effectively.

Abnormal fat makes the affected areas big and heavy. Enlarged areas are disfiguring and unsightly. The combination of increased fat and joint damage from swelling frequently leads to disabling orthopedic issues.

Areas affected by lymphedema swelling for long periods of time are at risk for lymphangiosarcoma, or Stewart–Treves syndrome, a rare form of cancer that is very aggressive and frequently fatal.

Phlebolymphedema

Phlebolymphedema is a form of lymphedema caused by capillary leakage, chronic venous insufficiency (CVI), or congestive heart failure (CHF) which result in swelling of the lower legs and feet. Swollen areas are at risk for chronic wounds that will not heal until the swelling is reduced. Skin in affected areas by be stained reddish brown by escaping blood products (hemosiderin staining).

Lipedema

Lipedema is both a form of lymphedema and a fat disorder that primarily affects women. Lipedema can be a progressive condition. In early stage lipedema there is lymphatic vessel leakage but no visible swelling. Later stage lipedema frequently includes lymphedema swelling of the lower legs. Swell from lipedema initially stops at the ankle, the feet and toes do not swell until later.

How Common is Lymphedema?

There are 5-10 million people with lymphedema in the United States including many people who have not been diagnosed. Lipedema probably affects an even larger number of people but only a fraction of lipedema cases are diagnosed and we do not have good statistical data.

Globally there are over 120 million cases of lymphedema but most of these are lymphatic filariasis, a tropical disease caused by a parasitic worm that obstructs lymphatic vessels. Filariasis is extremely rare in North America.

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