Living with lymphedema

This map shows states that have issued National Lymphedema Awareness Day resolutions. Today is National Lymphedema Awareness D-Day. Does your state recognize this condition and the people who live with it?

Courtesy of the National Lymphedema Network

Lymphedema … It’s a difficult word to spell (for me, anyway) and a condition that troubles many people living with breast cancer.

Defined by an abnormal collection of fluid just beneath the skin, lymphedema usually develops when lymph vessels are damaged or lymph nodes are removed. It also can be present when lymphatic vessels are missing or impaired due to a hereditary condition.

For breast cancer patients recovering from lymph node dissections or lumpectomies near the lymph nodes, lymphedema is a very real situation. The painful swelling and risk of infection as fluid pools in certain areas of the body is a medical reality that not everyone prepares for.

It is scary and can lead to serious health issues if not diagnosed and treated properly.

Lymphedema can develop in any part of the body but typically occurs in areas that are drained by lymph nodes. So, someone who had a lymph node dissection might develop the condition in the chest, back or arm on the same side. It typically begins at the farthest part of the limb (hand/wrist/foot, ankle) but can be seen in all areas.

Signs of lymphedema include a full or heavy sensation in the limbs; tightness of the skin; decreased flexibility in the limb; and, difficulty fitting into clothing or jewelry.

For people dealing with these issues, the condition is a daily reminder of their disease and life with cancer.

To salute people living with lymphedema, the National Lymphedema Network established National Lymphedema Awareness D-Day. Each March 6, the Network encourages people to learn about the condition and honor inspirational lymphedema patients.

‘On this day, we raise our voices together and say: ‘This is it! We demand treatment, coverage and support for this condition,’’ the Network’s website says. ‘On this day, we show the world that lymphedema is no longer a rare condition by honoring the many people living with it today, and the exceptional health care providers who, with dedication and support, have touched their lives and hearts.’

To participate in D-Day, people can choose someone to honor and contact the National Lymphedema Network, detailing this person’s life with lymphedema and what the condition has meant to them. The Network will provide an official National Lymphedema D-Day certificate.

To participate, send the following information by May 1 to nln@lymphnet.org:

• Patient’s name and age

• Type of lymphedema (Primary or secondary. Arm(s), leg(s), other)

• Honored by (Nominator’s name, contact information)

• Honorees City, state of residence

• Brief statement about this person and their life with lymphedema

• Patient’s mailing address or email to send a ‘Congratulations’ certificate

The National Lymphedema Network wants to honor people living with the uncertainties of this condition and provide support.

‘We give voice to lymphedema,’ the Network’s website says. ‘You are not alone. We are here for you, from the moment you are diagnosed and every moment thereafter. From your initial fear and anger upon diagnosis to your understanding and acceptance, we are your lifeline, your community, your support.’

To learn more about lymphedema and National Lymphedema Awareness D-Day, visit www.lymphnet.org.