Uri Landesman of Silver Spring is a 16-year-old hemophiliac. His body lacks a protein that helps blood to clot. Although Uri avoids rough physical activities that are potentially harmful to hemophiliacs, he is still susceptible to unpredictable internal bleeding that can lead to crippling of not properly treated.
To help control these bleeds, Uri takes precautionary, bi-weekly doses of concentrate, or clot-inducing medicine, at about $150 a dose. Still> accidents occur, and so Uri requires the care of several different kinds of medical specialists.
Until this year, Washington area hemophiliac children such as Uri and their parents had to seek out separate hemotologists, orthopedists, special dintists and, in some cases, teachers and psychiatrists to help with their special physical and emotional problems.
"We had to go to Pittsburgh to see one type of orthopedist and then to New York to see another," said Sarah Landesman, Uri's mother. "It was difficult to plan life from day to day running around like that, but there just didn't seem to be anyone here in Washington who was interested in hemophiliacs."
Now, the Hemophilia Comprehensive Care Center at Children's Hospital National Medical Center is making life a little easier for Washington area hemophiliac children and their families.
The center, which opened last Jaunary, brought together specialists to form a team capable of handling all the medical needs of hemophiliacs. The aim of the team, members say, is to provide patients with the best, most convenient medical care possoble as well as to give the children and their parents emotional support.
"We're a family here," said Dr. Naomi Luban, associate director of the center and the team's key hemotologist. "Our patients get us as a whole instead of having to go to 52 different places for treatment."
Luban said the team sits down with the patients and their parents to formulate the best overall plan for their needs. Some children are placed in a home treatment plan if that is suitable to them, while other children need the security of hospital care.
All patients, however, to go the center from time to time for complete physical checkups. In a single visit, a child sees a hemotologist, physical orthopedist, dentist, rehabilitation counselor, if necessary, and a nurse coordinator, who acts as a mediator between the team, its patients, and their parents, Because the child sees the same team members on each visit, the center's philosophy is that he will feel less apprehensive about the checkups and more comfortable with his disease.
"Every team member contributes information about the patient to the team so we get a baseline picture of him and his problems," said Diane Terry, nurse coordinator at the center. "The more we understand him, the better help we can give him."
Terry said many hemophiliac children have problems adjusting limitations and handicaps. Their parents often tend to be over-protective or refuse to face the reality of their child's disease altogether.
Teachers sometimes feel uncomfortable with hemophiliac students because they are unsure of what to do with the child if he should suddenly have a bleed. The hemophiliac children are also more likely to be poor students because they miss more days of school due to their illness.
When a patient has a problem adjusting at home or at school, members of the team go into the community to educate teachers, school nurses and family members of hemophiliacs about the special needs of their patients. The team hopes that, in this way, they can promote better understanding and acceptance of hemophiliacs.
In the time the center has been open, Luban said, the team has seen that parents of their patients need to discuss their special problems an d fears in groups.
"In a group, new mothers can get advise and encouragement from more experienced mothers of hemophiliacs," said Luban. "We're finding that fathers need a group, too. It's hard for them to accept that their sons can never be pro football or basketball players."
The hemophiliac patients - 99 per cent of whom are males because females are almost always only carriers of the hereditary disease - get together to work out their own common problems. Luban said the sort of "street living" found in a city is hard for hemophiliacs because they cannot prove themselves physically to their peers. She said that male hemophiliacs, especially adolescents, must be reassured that the activities they can engage in, though less physical, are no less masculine.
The comprehensive care center is one of 17 regional hemophilia centers in the United States. The Washington center opened with 26 patients and now has 40. Terry said that the center's continued growth is mainly due to its "outreach" program, which sends letters to area physicians who then make referrals.
Luban said she hopes to document that the concept of comprehensive care, now still on trial, is helping to improve the condition of hemophiliacs more than conventional methods of treatment are. She said she is meausring the number of bleeds that compared to the number that those receiving conventional care have.
"The center is something we had wanted for a long time," said Sarah Landesman. "It's still early, but it seems to have made a difference."
"I believe we'll prove that comprehensive care makes all the difference in the world," said Terry. "We're proud of the care we give our patients and progress we're making. The outlook and emphasis are optismistic."