National Lymphedema Network Honors Inspirational Patient in New Jersey

From: National Lymphedema Network
Published: Thu Mar 03 2005

March 3, 2005 -- Nancy Piwowar was 22-years-old when she was diagnosed with malignant melanoma. If it had not been for little kids mocking a mole on the back of her leg, she might not have ever had a doctor examine it.

As a result, surgeons removed lymph nodes from her leg. No one told Nancy at the time that she could experience swelling or discomfort years later. No one ever told her about lymphedema, an accumulation of lymphatic fluid that can cause extreme swelling in the upper or lower extremeties. Every cancer patient who has lymph nodes removed and/or radiation is at risk for the rest of their lives of developing lymphedema. It is a public health issue which is chronic, often incapacitating, disfiguring and is potentially life threatening if left untreated.

Fortunately, Nancy took a job as a letter carrier because walking 10-miles a day helped ease her discomfort. But, over the years when she complained about her symptoms to doctors, she was misdiagnosed with edema.

It took Nancy thirty years to get the proper diagnosis and treatment. Six months ago, through her own extensive research about her symptoms she finally learned about lymphedema and the NLN and began getting appropriate treatment. Today, she is being treated by Dr. Heikki Uustal, Physiatrist and Jennifer Piazza, a Lymphedma Therapist at the JFK Johnson Rehabilitative Institute in Edison, NJ. Nancy is feeling better and hopes she can help raise awareness about lymphedema so no one else goes through what she did.

Her efforts include contacting her local, city and state representatives to suggest they sponsor a resolution designating March 6, as Lymphedema Awareness Day in Plainfield, Union County, and the state of New Jersey. The Resolution passed. NJ Assemblywoman Linda Stender, sponsor of the resolution will present Nancy with the National Lymphedema Network Award on Tuesday, March 8 at 1:00 p.m. in the Centennial Hall at Muhlenberg Regional Medical Center in Plainfield, NJ.

Nancy would like to see a Lymphedema Awareness postage stamp created in order to bring national attention to this affliction. The NLN supports her in these efforts, and has issued an "Action Alert" to gain momentum for this postage stamp idea. They are also helping her form a local support group.

Nancy is taking an active role in contacting a broad variety of organizations, including non-profits, associations, civic and health organizations, and industry. She is proof that people faced with a chronic illness can be proactive about their own health and have a positive impact within their community and nationwide.

The NLN is a strong patient advocate and applauds Nancy's efforts. They have also created the Lymphedema Alert Bracelet to protect cancer survivors from receiving treatment to their affected arm(s) that could trigger or worsen an existing case of lymphedema.

Nancy says the information she has received from the National Lyphedema Network in the past six months is invaluable. She says, "It makes all the difference in the world when you know there's an organization that actively supports keeping patients like me educated and informed."

The NLN continues their efforts on behalf of patients like Nancy. On August 18-20, 2005 they will hold the 1st National Lymphedema Network (NLN) Patient Summit entitled: Lymphedema: Building Pathways to Health & Wellness. It will be held at John Ascuaga's Nugget Hotel & Resort in Sparks/Reno, Nevada.

It is specifically for lymphedema patients, those-at-risk, their family members and patient advocates.

(Color jpg Photos of Patient, Lymphedema Types Available, Video of Patient Interview & B-Roll)

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NLN Patient Summit Information contact:

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Press Contact: Maria Dorfner
Company Name: NewsMD Communications
Phone: 908-769-6198

More Information:

Company: National Lymphedema Network
Contact Name: Saskia R.J. Thiadens, R.N.
Contact Email:
Contact Phone: 800-541-3259

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