Lymphedema Information Brochure

What you need to know about

Lymphedema

CANADIAN LYMPHEDEMA FRAMEWORK

What is lymphedema?

Lymphedema (lim-fa-DEE-ma): chronic swelling (edema) caused by a buildup of fluid (lymph).

Lymphedema is a lifelong condition caused by a buildup of lymph fluid. This can happen when the lymphatic system is faulty or becomes damaged and cannot function normally. A damaged lymphatic system can lead to chronic (long-lasting) swelling in the tissues where lymph flow is blocked. The swelling is often in an arm or leg, but can also be in the breast, trunk, genitals, head, or neck.

What does the lymphatic system do?

The lymphatic system is a network of organs, vessels, and tissues. It is a vital part of the immune system. It includes a vast network of lymph vessels that transport and drain lymph fluid, and lymph nodes that filter bacteria, viruses, and other particles that can pose health risks. Clusters of lymph nodes are in our head, neck, armpits, stomach, and groin.

Its main functions are to: Keep a balance of fluid in the tissues Help fight infection by removing viruses and bacteria Move proteins and digested fats

Who develops lymphedema and why?

Primary lymphedema occurs when a person is born with a faulty lymphatic system. It may be present from birth or develop later in life.

Lymphedema affects men, women, and children of all ages.

Secondary lymphedema occurs when the lymphatic system becomes damaged from causes such as surgery, radiation therapy, longstanding obesity, injury, or trauma.

Secondary lymphedema can develop a short time after the lymphatic damage occurs or many years later.

People who undergo cancer treatment that includes the removal of or damage to lymph nodes or vessels are at a lifelong risk of developing secondary lymphedema.

Secondary lymphedema may also develop due to surgery unrelated to cancer, or other causes such as severe trauma, recurring infections, obesity, venous insufficiency or filariasis.

Secondary lymphedema usually develops in the part of the body where the lymph vessels or lymph nodes have been damaged.

Scan the QR Code or visit tinyURL.com/LE-Articles to access an online library of selected articles from our Pathways magazine that offer an introduction to lymphedema and related topics.

Am I at risk for lymphedema?

Your risk for lymphedema depends on a combination of factors, including:

Surgery with lymph nodes or vessels removed or damaged Radiation therapy or a traumatic injury Chronic venous disease Family history of chronic swelling Being overweight or physically inactive adds to these risk factors

How is lymphedema diagnosed?

If you notice any of the signs of lymphedema outlined below, see a health professional as soon possible. They will review your medical history, examine your swelling and symptoms, and check for clinical signs of lymphedema. They may also perform tests to rule out other causes of swelling.

What are the signs and symptoms of lymphedema?

Sudden, gradual, or occasional swelling Clothing, shoes, or jewelry such as rings or watches may feel tighter Feelings of heaviness, tightness, fullness, or heat Aches, shooting pain, or pins and needles Less joint movement and mobility Infection of the skin (called cellulitis)

If you notice any of the above signs, see a health professional.

Can lymphedema be treated?

With early diagnosis and treatment, you can take control of lymphedema and lower your risk of it getting worse.

The best treatment to control lymphedema and manage the swelling is decongestive lymphatic therapy from a trained and certified lymphedema therapist. It includes: Education about recommended skin care to reduce the risk of infection Compression bandaging or devices to reduce the swelling and/or daily wear of compression sleeves or stockings to contain swelling Exercises to promote lymphatic flow and to increase activity and fitness Manual treatment techniques (including, but not limited to, manual lymph drainage, a special type of gentle massage) to improve lymph flow, direct fluid to alternate pathways, and unblock or soften hardened tissue

Is there any medication I can take?

Currently there is no medication to treat or cure lymphedema. Diuretics are not recommended.

However, if you take diuretics for another condition, keep taking them and speak to a health professional about your options.

Lymphedema cannot be cured.

However, with proper treatment and self-care, it can be controlled.

How can I lower my risk of lymphedema?

If you are at risk for developing lymphedema, or living with it, these self-care tips will help:

Practice good skin care Moisturize to avoid dry, cracked skin Apply sunscreen and avoid high summer heat to prevent burning Use insect repellant and protective clothing against bites Wear gloves to protect your hands when gardening, cooking, or cleaning Use an electric shaver instead of a razor when shaving your underarms or legs

Lower your risk for infection Take care of scratches, pinpricks, cuts, burns, or splinters right away Get treated for skin problems, including inflammation, fungal infections, ingrown toenails, or dermatitis

Avoid skin punctures If possible, avoid injections, blood tests, or vaccination shots on the affected limb

What is cellulitis?

Cellulitis is a sudden, non-contagious, bacterial infection of the tissues under the skin.

Infection can enter the body through a break in the skin, fungal infections (under nails), or an existing wound or skin inflammation.

People with lymphedema are at risk for cellulitis because their lymphatic system is less able to fight infection.

Exercise regularly Exercise regularly at a moderate pace to build strength, stamina, flexibility, and to prevent injury. Try to get active and stay active!

Start slowly when you begin any new activity

Take it easy! Whatever you do, give yourself time and take extra breaks.

Aim for a healthy body weight Eat lots of fruits and vegetables, with less red meat and processed foods If you think you are overweight, speak to a health professional about healthy weight management ideas

Avoid high temperatures Stay indoors in the high heat of summer, avoid the use of spas/saunas, and take warm, rather than hot, baths and showers

Avoid tight clothes and jewelry Avoid restrictive clothing and tight jewelry, such as rings, bracelets, or watch bands on the affected limb

Signs and symptoms: Skin that is swollen, hot, red or has a reddish rash Skin that feels painful to the touch Warmth

Flu-like symptoms, feelings of nausea, fever or chills Seek medical help without delay. Cellulitis can spread quickly and requires antibiotic treatment.

Hope for the future Research is helping us to better understand lymphedema. Advances in diagnostic imaging, surgical techniques, potential drugs, and our ability to predict lymphedema give us hope that how we detect, treat, and manage lymphedema in the future will improve greatly.

You are not alone.

Being diagnosed with lymphedema can be emotional. You may feel angry, sad, or upset about how lymphedema affects your life.

There is support for you. In Canada, there are trained lymphedema therapists, patientfocused organizations, and other people living with lymphedema who can help you.

Visit the Canadian Lymphedema Framework website canadalymph.ca where you will find links to lymphedema associations and more information about therapists, programs, and services, including support groups, helplines, educational events, and advocacy campaigns.

The CLF proudly partners with the provincial lymphedema associations across Canada.

Learn more about your local association and explore the benefits of membership at canadalymph.ca/provinces

CANADIAN LYMPHEDEMA FRAMEWORK EDUCATION. RESEARCH. PARTNERSHIPS.

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This brochure is a publication of the Canadian Lymphedema Framework. © January 2024