Aplastic Anemia: Sharon's Story

"Information is power, it's empowering to know what you're dealing with, whether you're a patient or parent of a child with a disability."

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Sharon Dickol 

Newark, Delaware 
Aplastic Anemia 
Transplanted in 1978 
Many thanks to the American Society for Transplantation and Cellular Therapy for helping us share Sharon’s story.  
Sharon Dickol is adding up her blessings: “I have lived three times as long as I would have if bone marrow transplant was not available to me in 1978!” she begins. Her brother Steve has twice offered her a miraculous gift: once as a bone marrow donor and later as a limbal stem cell donor. “Because of him,” says Sharon, “not only am I alive, I can see today He jokes that if he ever needs an organ, he’ll come to me.” And finally, there are the 47 books Sharon has read this year; an exciting achievement for a woman who was once legally blind.
These days, her life is immeasurably sweet. But Sharon’s path to relatively good health and peace has been anything but predictable. 
In 1978, she was a happy, healthy college coed, looking forward to building a meaningful career in Special Education. “I intended to devote my life,” Sharon says, “to people with special needs.” What she did not imagine was that she herself would become a person with a disability and the mother of a child with special needs.  
In the summer after her junior year, when she was just 21, Sharon’s life swerved radically away from the one she envisioned – a small accident led to a disproportionately large injury and she was diagnosed with life-threatening aplastic anemia. Her parents were a bulwark of caring. These decades later, Sharon still treasures the calm constancy they conveyed.
“My dad told me, ‘What you have is serious, but it can be treated.’” The treatment was a bone marrow transplant which, at the time, was very experimental.
Her three brothers -- Steven, Mark and Jay -- offered moral support and hope; two of the three were a genetic match and able to serve as her bone marrow donor. Ultimately it was decided that Steve, the oldest, would be her donor. As Sharon remembers, “Back then there were no bone marrow registries. It was a sibling donor or nothing.” 
Sharon’s groundbreaking transplant took place at Children’s Hospital of Philadelphia. Because she was treated in a children’s hospital, Sharon remembers, “They didn’t even have a bed big enough for me.” Though experimental, her bone marrow transplant was fully curative.  
When Sharon first got sick, in one of life’s tender surprises, she also began to fall in love. Bob -- someone she dated briefly in high school and a friend of her brother Mark -- learned Sharon was hospitalized and began to visit regularly. She remembers this time fondly,
“I was in the hospital for weeks at a time, so we got permission to go out to dinner and the theater. I remember he took me to see Man of La Mancha and then, at the end of the night, he took me back to the hospital.” If this was an atypical courtship, it was also the beginning of an extraordinary partnership. Sharon describes Bob as “an incredibly strong person who, when I was down, would let me be down, but then he picked me right back up!”  
As Bob and Sharon’s relationship deepened, they made plans to be married. At the same time, Sharon began suffering from severe, damaging eye dryness from graft-versus-host disease (GVHD). As Sharon recalls, “By the time we married in 1981, I was legally blind. After marriage, it took me four years to return to school to complete my degree. By that time, I was using a white cane and eventually a guide dog.” Sharon further reflects, “My doctors educated me and my family about GVHD, but they could not foresee all the damage I would eventually encounter.”  
At the beginning of their married life, Sharon and Bob also faced intense challenges as GVHD impacted Sharon’s sexual and reproductive health. Sharon says, “I was told prior to transplant that infertility was likely, but when my normal periods resumed following transplant, we were told that conception was now a possibility. When we couldn't conceive, we eventually learned it was due to blocked fallopian tubes, likely due to GVHD.”
As much as transplant medicine has evolved, Sharon finds some of the problems she experienced nearly 40 years ago with vaginal GVHD persist to this day. “It makes me so mad,” Sharon says, “because the information is out there. There were articles out as early as 1984 warning about the vaginal adhesions from GVHD This is very painful, physically and emotionally, especially when you’re young and getting into adult married life. Women today are still finding out far too late.”  
Facing permanent infertility, Sharon and Bob were undaunted in their desire to grow their family. They decided to adopt, but Sharon’s loss of vision also impacted her dream of motherhood. “Finding an adoption agency that would accept me as a parent was difficult.” Ultimately, she and Bob decided to adopt internationally from Columbia.
Sharon recalls, “Drew came to us at ten weeks old. It was decided that my husband would go get him, because we didn’t want the agency to see my visual impairment. We joke that my husband delivered our first born.” Drew was soon joined by his sister, Laura, also from Columbia. Sharon was now, happily, the mother of two small children but unable to read or to drive.  
Around this time, Bob’s work required them to move to Georgia, which meant leaving beloved family behind and finding new doctors. In Georgia, Sharon was lucky to work with new ophthalmologists who offered hope in various forms -- from cornea transplants to limbal stem cell grafts. She pursued treatment and found healing over the course of years. Beautifully, but not surprisingly, her brother Steve was once more Sharon’s donor for the limbal stem cells needed for a graft. Eventually, Sharon also had a successful cornea transplant that restored vision in her left eye.  
Even as Sharon and family celebrated the return of her vision, they coped with the most painful news they had ever received. Their son Drew was missing major milestones and his first doctor attributed clear hallmarks of a genetic syndrome to Drew’s “Columbian features.” Sharon persisted in seeking care for Drew until, just before his 4th birthday, he was correctly and heartbreakingly diagnosed with Hunter Syndrome. Sharon, Bob and Laura gave Drew their total devotion and love in the time they shared with him, before he passed away at the age of twelve. “All our energies,” Sharon says, “were focused on his health and education.” Because she had to be an advocate for her own health, one can imagine what a powerful advocate Sharon became for her son.
Sharon appreciates how much transplant medicine has evolved since since her early treatment. “I’m grateful to see things like BMT InfoNet out there,” she says. “Back in 1978 there was no internet. In 1980, I started a newsletter for chronic GVHD sufferers, we called it ‘The Host.’” Sharon further reflects, “Information is power, it’s empowering to know what you’re dealing with, whether you’re a patient or a parent of a child with a disability.” Sharon carries those experiences always, even as her life runs forward in lovely directions.  

Next summer, when their daughter Laura is married, Bob and Sharon will celebrate her union as they cherish their own. Recently retired, they have bought an RV and are working their way through the splendor of the National Parks. All of the beauty they find along the way Sharon sees perfectly. “The reason I wanted to do this interview,” Sharon explains, “is to say that it can be hard for many years. But if you can persevere and find a way to get through -- life can be really beautiful. You just have to give yourself the chance to get that far.”

The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education and clinical practice to deliver the best, comprehensive patient care.