Lymphedema: What You Need to Know

I am a Tennessee-licensed orthotist and have been fitting compression garments and mastectomy products, as well as bracing, for nearly 20 years. I have a deep concern for patients suffering from lymphedema and hope to educate the public and the medical professions about proper diagnosis and treatment of this disorder.

Lymphedema is swelling of a body part, usually an extremity, that is caused by abnormal accumulation of lymph fluid due to a compromised lymphatic system. It may occur in the face, neck, back, abdomen, or genitals. It carries with it a constant risk of uncontrolled infection in the affected body part. There are two types of lymphedema:

Primary —Due to a birth defect, it can present at birth or later, and is more common in females and the lower limbs. Secondary —Caused by injury to, scarring of, or removal of lymph nodes, it usually occurs as a result of radiation and/or surgery of the lymph nodes in the neck, axilla, pelvis, or groin. Occasionally, secondary lymphedema is caused by obesity or chronic infections of the lymphatic system.

According to the British Journal of Dermatology, more than 100 million people worldwide are currently diagnosed with lymphedema. Unfortunately, relatively little research on this condition exists and many people who are not properly treated or diagnosed suffer from this disorder.

However, effective treatment is available. It includes manual decongestive lymphatic drainage by a certified lymphatic therapist, plus bandaging, exercise, and use of compression garments. Proper treatment reduces hospital stays and antibiotic treatments secondary to recurring cellulitis and infection.

After attending my first lymphedema conference, which was held by the Lighthouse Lymphedema Network, I shared what I had learned with my referring doctors. Most of them were very surprised to learn what comprises proper treatment for the condition. On numerous occasions, physicians have told me that lymphatic diseases are barely discussed in medical school, and their treatment plans are not discussed at all. In my practice, I encounter many physicians who prescribe garments without suggesting any other treatment plan.

Because of this, I meet many patients who have not been properly diagnosed and have spent years going through hospitalizations and wound care due to recurring infections. The patients' quality of life diminishes as they become unable to work or do daily routines due to lymphedema.

Thomas Hovatter came to me in 2007 with very swollen legs that had cellulitis and weeping wounds. He came with an order for compression hose, for a diagnosis of venous stasis. One day, he showed me something, saying he could not get a doctor to tell him what was wrong. Thomas' scrotum was bigger than a bushel basket. He asked me to find a scrotal support, because he could hardly walk or tolerate the pain. I measured him for a custom compression garment and placed the order. The manufacturer questioned my measurements, so I e-mailed them pictures. A representative called and stated that Thomas definitely had lymphedema and needed treatment. I told them he had not been diagnosed with lymphedema and therefore no treatment plan had been ordered.

Thomas had seen a general practitioner and a urologist. Finally, he was sent to a dermatologist who immediately diagnosed him with lymphedema. I asked for a referral to a physical therapist who specializes in manual decongestive lymphatic drainage. We had set up that appointment for him when Thomas' wife, Jennifer, lost her job—and therefore their insurance—so they could not pursue treatment. Thomas Hovatter died from complications from lymphedema at age 44.

Jennifer Hovatter and I have founded the Thomas Hovatter Lymphedema Support Group in an effort to prevent Thomas' tragedy from happening to anyone else, and to serve lymphedema patients. We have approached the James H. Quillen College of Medicine at East Tennessee State University, Johnson City, about adding to their curriculum more in-depth study of the lymphatic system and proper treatment for lymphedema. We hold yard sales and other fundraisers to pay for garments and bandages because while most insurance plans cover lymphatic drainage therapy, few cover the necessary compression garments and none, in my experience, cover the bandages. With the help of State Rep. Dale Ford (R-TN), we passed a bill declaring June 18 to be Tennessee State Lymphedema Awareness Day. We held our 2nd annual Tennessee Lymphedema Awareness Day seminar on June 20, bringing together therapists and patients to tell their stories about this disorder.

This is a strong start, but it's not enough. We welcome any input toward continuing this lifesaving work. For more information, please visit the websites below:

www.lymphedemalighthouse.org www.lymphedemapeople.com www.acols.com

Patti Graybeal, CFom, CMF, COF, works at Graybeal Orthopedic Appliances, Johnson City, Tennessee, a third-generation family-owned business.

Lymphedema: What You Need to Know

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