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Meet Activist GrannyBarb Lackritz

By Nancy Keene

Barb Lackritz, mother of three adult children, had worked as a speech pathologist for 30 years when she was diagnosed with B-cell chronic lymphocytic leukemia (CLL) in 1989. She was an information gatherer from the day of diagnosis and dove into research both in print and online. She says, "I tell doctors that people like me can be their strongest ally or their worst nightmare. Since I pick my doctors carefully, I have had some wonderful allies."

Lackritz's disease did not follow the typical indolent course. Within two years, her white counts had reached 100,000, her lymphocytes were 99%, and her red cell counts were low. Her lymph nodes swelled, and she started having night sweats. After more research, she started on fludarabine. Six courses later, she was in remission.

While Lackritz was watching her counts rise and researching the disease and treatment options, she promised herself that no patient with her disease would ever have to endure the horror of feeling alone if she could prevent it. Lackritz, known as GrannyBarb on the Internet, started a web page for others with CLL and was a regular participant on CANCER-L, one of the first listservs hosted by ACOR (Association of Cancer Online Resources).

As her website grew, she found another leukemia site built by Art Flatau, an AML survivor. Lackritz and Flatau decided to combine their sites. They now run the world-famous leukemia site known as "GrannyBarb and Art's Leukemia Links." This huge, accurate, and user-friendly site describes the various adult leukemias and contains information on treatment options, genetic information, links to the best sites on the Web, a site map, and Lackritz's and Flatau's personal stories. The two share a deep friendship and a passion for accurate information. Lackritz says, "Art is phenomenal. We constantly communicate and tend to see things the same way. In all these years, we've never had an argument."

While Lackritz continued to help people with CLL feel less alone, her own cancer returned in 1994. This time, the cancer had spread to her lungs and sinuses. She went on fludarabine and cytoxan and researched transplant options. Meanwhile, the growth of online discussion groups exploded. Cancer-L and HEM-ONC divided into dozens of cancer-specific groups. The numbers of people with cancer who communicated through ACOR swelled into the tens of thousands. Lackritz administered several of the lists including CLL and HEM-ONC. She answered thousands of email questions and talked on the phone to innumerable people with cancer.

In 1996, Lackritz chose to have a peripheral blood stem cell transplant at M.D. Anderson Cancer Center in Houston. Her insurance company, however, refused to pay for it. While the battle over payment raged, Lackritz went to Dana-Farber Cancer Institute in Boston for a second opinion. When she arrived, the oncologist had spoken with one of his colleagues who was a member of HEM-ONC, and had taken the time to download and read "GrannyBarb's Story" at the leukemia links site. Their initial conversation lasted three hours, and Lackritz remarked, "I felt I had found a doctor whom I could trust to answer my questions honestly and who deeply cared about his patients. He answered all of my questions, and I was more comfortable with the proposed program than I could have believed." After serious bouts with pneumonia and more chemo to get the cancer into remission again, Lackritz had an autologous bone marrow transplant at Dana-Farber in June 1997.

During her hospitalization, her online friends rallied around. Those who lived in Boston brought food, jokes, and a laptop and provided free local Internet access. People whom Lackritz had known on the Internet for years came by to visit in person. Online friends sent hundreds of cards and good wishes. Despite some post-BMT side effects, Lackritz recovered with the love and support of her family and friends.

Lackritz continues to make good on her promise. The ACOR CLL list she administers now has over 1,600 members while HEM-ONC has over 700. Lackritz and Flatau continually update and improve the Leukemia Links site. Lackritz is a member of the board of directors of ACOR and the CLL Foundation. In March 1999, she was appointed to the National Institutes of Health Director's Council of Public Representatives (COPR). She is just completing a book on adult leukemia that will be published by O'Reilly & Associates, Inc.'s Patient-Centered Guides series in early 2001. Lackritz says, "What I receive from my service to my fellows is so much more than I give. I have met so many phenomenal, loving, brilliant people all over the world, and we help each other. I feel blessed."

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