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by Sara Patterson

Barbara and Don White 

People often wonder how ASAP got started. I'd like to tell you a little about Barbara White who began this project with her husband, Don. Barbara first visited a neurologist in May of 1983. She was hospitalized for three weeks for extensive testing and sent home with a diagnosis: Syringomyelia. She described her first reaction as one with which many of us are familiar, "Write the prescription and I will be sure and take it all!" Of course, she would learn it would not be so easy.

The first step for Barbara after her diagnosis was to visit the list of neurosurgeons her neurologist had recommended for her. The first three refused to do the surgery. Confused and very frightened, Barbara gave up before seeing the fourth neurosurgeon. The process and cost of visiting so many doctors who seemed unwilling or unable to answer questions left Barbara and Don even more fearful and anxious about what the future might hold for them. Don wrote, "We fully expected that Barbara would wake up some morning totally paralyzed."

When Barbara's neurologist heard she had given up, he called her to insist she see the last neurosurgeon. She did. This doctor seemed quite knowledgeable; in fact he had treated five other patients! Barbara and Don both thought that now all would be well! But no, the doctor explained none of the damage could be reversed but a successful surgery could stop the progression.

Barbara's grit would be put to the test right away. At the time of her diagnosis she had just gotten a new job, and her insurance policy had not yet gone into effect when she was initially hospitalized. Now she learned they would not pay for the hospital stay, nor any other treatment for Syringomyelia, because it was considered a pre-existing condition. Barbara was advised that without surgical treatment she would definitely become paralyzed. She was now not only desperate for information about this strange illness but needed to find funding for her treatment also.

Finally the Texas Rehabilitation Commission agreed to pay for her surgery. It would be the first of six, none of which would slow the relentless progression of SM. In 1987 she was told nothing more could be done for her. But that did not stop Barbara from doing something for her fellow SM sufferers. In May of 1988, five years after her diagnosis, she and Don would officially launch ASAP.

It may be hard for some us to understand the great vacuum of information that overshadowed Syringomyelia at the time Barbara was diagnosed. MRIs were only just becoming available, and very few people were ever diagnosed with the disorder. When she first contacted the National Organization of Rare Disorders, Barbara found it was not even on their list! The most they could offer her was a list of fifteen people known to have the disease.

By doing extensive networking she was able to discover another list of eight people with the disorder, and by appearing on her local television station she was able to meet two more people within a hundred miles of her. She knew then that others must be out there, it was only a matter of finding them. Barbara was determined. She felt very strongly that together, these people could make a difference. Together they could promote awareness and press for more research to one day find a cure.

Barbara's networking endeavors led her to make some interesting discoveries. In November of 1988 she found a young child, only six, who had Syringomyelia. Now she was even more sure a cure must be found. She wrote, "When we first began putting ASAP together I felt nothing was coming together fast enough. When we began hearing back from Syringomyelics there was desperation in varying degrees of each person....But when you talk with a parent of a child with SM and you realize they are depending on an organization such as ASAP to try and hurry research along ....then you realize only God can open such doors."

Learning that children were suffering from this disorder was very hard for her to bear. She wrote, "I pray with all my heart that research could be done quickly so that we never have to have another poster child."

Besides the networking project, Barbara was also eager to promote awareness of the disorder among physicians and encourage research endeavors. Early on she was directed to a doctor in England, Mr. Bernard Williams, M.D., who was very interested in Syringomyelia. He sent her all the papers he had written and gave her names of doctors in the United States who also had an interest in the disorder. For years she searched for doctors interested in researching the disease, but funds were always impossible to find. She wrote to anyone who would listen... newspapers, television stations, lawmakers, doctors. Each year since 1988 a conference has been held to bring people with SM together, with doctors like the late Mr. Williams there to share research findings and help patients better understand their disorder.

Barbara White died on December 10, 1991 at the age of 45. At the time of her death she was quadriplegic and suffering a great deal of pain, but she never ceased to be a ray of hope to every person who called ASAP looking for answers. She wanted every person with Chiari or Syringomyelia to know they were not alone.

Back when she was diagnosed, there was no 1-800 number to call, no one to send her a packet of information, no one to answer even one of her many questions. Without her determination to bring Syringomyelia out of the closet, it most surely would still be there. Today, ASAP has almost 3,000 members and is recognized by many national health organizations. The organization has a Medical Advisory Board in place and research projects underway. Great strides have been made and continue to be made every day.

The work that Barbara began must continue. The "cure" that she was hoping to find has still eluded us. But with perseverance and determination, we can still hope that tomorrow it will be found.