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Judi Wilkinson

Judi Wilkinson of Ormond Beach, Florida, has worked as a mortgage underwriter, 911 operator and auto racing team manager. She was accustomed to handling tough situations, as well as emergencies.

But when the strong and active mother of two received her aplastic anemia diagnosis 14 years ago, she was just as stunned as every other bone marrow failure patient. "It scared the daylights out of  me."

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Disease

Judi recalls being in the best shape of her life since high school when, out of the blue, she felt oddly tired one morning. By evening, she had developed purple dots all over her limbs.

The next day, she was bleeding internally and was rushed to the emergency room of her local hospital. “You could see the urgency in the doctors’ faces, who immediately called in an oncologist. Luckily, I got the right guy, and he quickly understood that he couldn’t treat me.” Judi’s CBC [complete blood count] was virtually zero – her white blood cells and platelets were zero, and her hemoglobin was under five. The diagnosis was very severe aplastic anemia, and she was instructed to head to NIH as soon as possible. The hospital sent her home with two ominous-looking bags:  One was filled with antibiotics, the other with thick face masks.

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Treatment

Dr. Neal Young runs the hematology branch of the National Heart, Lung and Blood Institute at NIH and is considered the world’s leading authority on aplastic anemia. After rerunning Judi’s tests to make his own diagnosis, he told her that she had a 50 percent chance of making it.

“I didn't think about dying. All I could think of was who’s going to take care of my kids.” She was blessed to have a DNA match with her sister, but NIH had no clinical trials on bone marrow transplantation at that time. If she chose to go that route, Dr. Young told her, she would have to return to Florida and have the procedure done locally. “I wasn’t going to do that. I was going to stay at NIH and Dr. Young was going to be my doctor.”

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Education

Once she made the crucial decision to remain at NIH, Judi began her ATG and cyclosporine treatment, and then had to cope with the serum sickness that followed. When she was able to "get back to life", she focused on learning as much as she could about her disorder.

Her online research was how Judi found out about AAMDSIF, and she’s been a part of the Foundation’s family of volunteers ever since the year after she got well. During the difficult treatment phase at NIH in Bethesda, Maryland, Judi was alone and far from home. Hard as that was, it made her realize how much she wanted to help other aplastic anemia patients whose lives had been suddenly  turned upside down like just like hers. In the process, she discovered she had a natural talent for educating people to help them make their own informed decisions. Having travelled the same path, she was able to explain the frightening medical jargon in simple terms and with a great deal of empathy.   

 

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Support

“I didn’t have much of a support system, which is probably why I do as much as I do.” What she does is provide personal one-on-one support as part of AAMDSIF’s peer-to-peer patient support program. Over the years, she's brought comfort and hope to the hundreds of patients she has connected with.

To extend her reach, Judi also started her own closed Facebook page for aplastic anemia patients, which now has over 700 participants. She also encourages patients and families to support AAMDSIF.  “I’ve had people selling t-shirts, having barbecues, organizing walks and runs, and holding contests between police departments and fire departments to see who could raise the most money.”

Judi's dedication to helping other aplastic anemia patients has become her mission. "My life is about what I can do for somebody else, and that has changed me profoundly."