Lymphedema sufferers must cope for a lifetime
BY BORDEN BLACK --
Special to the Ledger-Enquirer (Columbus, Georgia)
Tuesday Oct. 30, 2007
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Lymphedema is one of those little-known conditions that doesn't spark telethons or poster children. It is life-altering, however, and can dictate lifestyle. I should know. I've had lymphedema since the lymph nodes in my legs were removed following cancer surgery.
About lymphedema
The lymph system has been described as the sewage system of the body. Waste products, bacteria, dead cells and large protein molecules are transported in lymph from tissue to the nodes where they are broken down and eliminated. When the system is broken, abnormal accumulation of protein-rich fluid can accumulate, usually in an arm or leg. This results in swelling in the limb and thickening of the skin known as lymphedema. The condition can be painful and disfiguring and can result in infections, depression and decreased mobility.
While primary lymphedema occurs at birth, secondary lymphedema is the result of damage to the lymphatic system. It is the most common form of lymphedema, and frequently occurs in cancer patients. Dr. Kathleen Francis, Medical Director of the Barnabas Lymphedema Treatment Center in Livingston, N.J., points out that if the lymph nodes in the armpit area are removed or radiated as a result of breast cancer treatment, it can lead to lymphedema.
She was among the doctors, therapists and patients who gathered in Atlanta recently for a conference sponsored by the Lighthouse Lymphedema Network. The nonprofit support organization was formed by Joan White, who developed the condition as the result of appendicitis. The idea for the organization grew from a discussion around her kitchen table in 1994. She points out that quality of life is a huge issue for those with the condition, many of whom have survived cancer only to find that they must continue to spend a great deal of time and energy dealing with the resulting lymphedema. The need for support, advice and awareness led to formation of the network.
The problems
Dr. Paula Steward, Medical Director of Lakeshore HealthSouth Rehabilitation Hospital in Birmingham, Ala., explained the problem faced by those suffering from lymphedema by quoting Dr. Robert Lerner: "In the past physicians played down the importance of lymphedema and pointed out that it is rare, that there is no effective treatment and that the patient must learn to live with it... . They have failed to instruct patients on how to avoid lymphedema... and continue to grossly understate the incidence of this serious and lifelong illness." She points out that correct diagnosis is essential in providing effective treatment.
Several other conditions, including inflammatory arthritis and post-phlebitic syndrome, have similar symptoms so accurate tests are needed for proper diagnosis. Currently, ultrasound, magnetic resonance imaging and computed tomography (CT) are used, but a diagnostic tool being employed in Europe is seen as the best option. Dr. Waldemar Olszewski, a world renowned expert in lymphedema, came from the Polish Academy of Science Hospital in Warsaw to discuss with conference attendees isotopic lymphoscintigraphy. The procedure has yet to be approved for use in America, but according to Olszewski: "It is necessary for the establishment of rational therapy."
Once correctly diagnosed, the lymphedema patient faces a lifetime of treatment because there is no cure. Swelling can be managed through a specialized massage technique known as manual lymphatic drainage, by using compression garments and bandages daily, by engaging in regular exercise and maintaining meticulous skin and nail care.
White points out that in many cases physicians are not acquainted with treatment for the condition and patients get most of their information from massage therapists. In fact she says often patients with swelling are diagnosed by therapists. Another difficulty according to White is the failure of insurance companies to pay for therapy or compression garments.
Solutions
Although there is no cure, Dr. David Feingold told those attending the Lighthouse conference that genetics may be the answer. "How do you generate new lymphatics?" That is the question being examined by the genetic researcher. Three genes have been identified, and experiments are under way.
Until an answer is found, awareness and education are the focus of the Lighthouse Lymphedema Network. A bill has been introduced by Georgia state Rep. Debbie Buckner. The house bill provides for a pilot program to test and evaluate a system of coverage for costs associated with the prevention and treatment of lymphedema and to provide for data collection.
The Atlanta organization has also set aside Oct. 22 as Lymphedema Awareness Day in Georgia.
Although awareness is growing, White points out that it is still "an image thing" and many of those with the condition are reluctant to go public and as a result there is still a lack of emphasis.
Ledger Inquirer
About Me
- Pat O'Connor
- Am old enough to understand the difference between the Bay of Pigs - and roasting a pig at a epicurian feast. Been thru the hippy, yippie and yuppie years - always remaining who I am. Very much believe in "Sing your own song - weave your own tapestry" Am young enough to still know the thrill of new discoveries, the beauty of the evening, to celebrate the joy of another tommorow. Survived these many decades with a severe medical problems. Sorting out the maze of now having two lymphomas and all their nasty little companions, but I continue. Besides, being a simple iconoclastic eclectic, have been called many things. An incurable romanticist - with a strong touch of reality. Thinker, intellectual (God, how I hate that term) - been told I am a lion with the heart of the poet. Know how to wage war and conquer my foes - but would rather be known as one who brings hope and life. To bring hope into anothers life is the ultimate of joys. Life should be about bringing hope, peace, vision... a sense of purpose beyond yourself.