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When dealing with an uncommon disease such as tuberous sclerosis, most people have probably found themselves explaining the nature of the disease to physicians who have little idea of what to watch for. Frustrated by such visits, several families in the DC/Maryland/Virginia region arrive at the quarterly TSC Clinic in Fairfax, Virginia hoping to have their questions answered for a change.

On this particular Saturday morning in late October, the NTSA-approved clinic bustles with activity. Nancy Elling, the coordinator, flies about simultaneously trying to greet families and establish order. The neurologists, Dr. William McClintock, Dr. David Daigh, Dr. Lawrence Pearl, and Dr. Michael Medlock are seen examining and discussing CT scans of a little girl that they had just seen. Nancy participates whenever she has the chance. Dermatologist Dr. Silverman is trying to examine all of the patients and still make a noon flight for a vacation with his wife to celebrate their anniversary.

Meanwhile in the waiting room, kids run around and parents are socializing. One young woman in her mid-20s, who was recently diagnosed after a car accident triggered seizures, finishes talking to geneticist Dr. Susan Black and lingers to listen to Johanna Covel's story. Johanna, a volunteer who dropped in, is talking about her daughter's experiences with the ketogenic diet several years ago. "Everything was cooked in butter, and she had to have whipped cream at every meal," she relates to an amazed audience.

In another corner of the room, Susan Taylor, Nancy's volunteer partner, talks to other parents about a new therapy program that she is considering for her son. Anne Carey, who brought in her 3-year-old son Douglas for a follow-up visit, comments that "the nicest thing about the clinic is you get to see all of the doctors in one setting... who have TS as a specialty. It is also good to meet other parents and see what the current most thinking is about TS." Susan agrees. "I really think it's important to all of us to pool information, so we can learn more faster. You can't learn from one family what you can learn from fifty families- it's common sense," she emphasizes. Nancy reiterates that families talking to each other is just as important as meeting the doctors.

When the last family leaves, it is close to three o'clock in the afternoon, two hours after the official end of the clinic. Dr. Black, who left once and was called in again to see two more families, is finished and walks out with Nancy who has gathered her files and the leftover refreshments. While Nancy is hungry and tired, she is happy that so many families attended. For her that is enough to make it worth her while.