Treating Russia's `secret' disease

SUN JOURNAL

Opportunity: Local and foreign groups are trying to give children with hemophilia the normal life they were denied under the former Soviet regime.

April 27, 1999|By RACHEL V. KATZ | RACHEL V. KATZ,SPECIAL TO THE SUN

ST. PETERSBURG, Russia -- Once a week, Pavel Yakovlev gets a chance to be like other kids. Traveling to the outskirts of St. Petersburg, he dons a pair of black and white swim trunks and spends a half-hour splashing around the pool at the Obukhovitz Sports Complex near an old munitions plant.

"I love to swim," the 7-year-old says. "It's good to move around."

Moving around is not something he gets to do very much, one of many limitations he faces as a child with hemophilia in Russia. U.S. and local efforts during the past five years have helped families deal with the condition, but economic crises and long-standing misconceptions still hamper these children's attempts to lead a normal life.

"For the most part, I have children who don't go to school. They stay at home and have no contact with others their age," says Elena Teryoshina, a senior clinical nurse at the city's Hemophilia Clinic. She is also general manager of the Firebird Foundation, a nonprofit organization designed to provide medical supplies and increase the opportunities for such children to live as normal a life as possible.

In a country that produced perhaps the world's most famous hemophiliac -- the last Romanov czarevitch, Alexei -- children with hemophilia were shunted aside under Soviet rule. The state registered them, along with others considered abnormal, as invalids. Many families were given housing on the fringes of the city, and the children rarely had access to regular schooling.

As author and Firebird founder Suzanne Massie observed when she first tried to meet Russian children with hemophilia, "These children were more secret than missiles."

Hemophilia is a hereditary condition usually affecting boys in which the blood lacks one or more clotting agents that stop bleeding. An estimated 160 children in St. Petersburg, known as Leningrad during Soviet times, suffer from one of several forms of hemophilia or Willebrand's disease, a similar condition affecting girls. There are nearly 2,000 such children in the surrounding Leningrad region.

For children with hemophilia, the biggest fears are bumps and bruises that swell under the skin and can immobilize joints. One of the foundation's early focuses was to make available to Russian families a solution known as "factor," containing the blood's natural clotting elements, that can be infused into the blood.

Soon, a small but steady quantity was arriving as humanitarian aid, often donated by pharmaceutical companies. Some Russian companies have begun to produce the solution, helping some of these children catch a glimpse of life beyond a wheelchair.

The foundation launched the swimming program four years ago because the low-impact sport provides much-needed exercise and therapy for weakened muscles. In addition, the foundation supports a computer class for children and helped get a newsletter started.

Editor of the newsletter Kapelka -- "Little Drop" -- is Anatoly Makeyevich. As a child, he spent much of his time in a hospital bed and countless days in a wheelchair. He met Massie in 1993 during one of her visits, and she arranged for him to travel to the Boston Hemophilia Center for eye surgery.

That trip deeply affected his ambitions. "The most important thing for me was that I saw that people with hemophilia are not like we are here. They're normal people. They move around," recalls Makeyevich, now a tall, lanky 18-year-old. "I saw that people with hemophilia could be normal, and I decided that I would live a normal life." He was most likely the first child in Russia to learn how to self-infuse with factor.

Today, Makeyevich is studying at St. Petersburg's First Medical Institute with dreams of becoming a geneticist and beating hemophilia once and for all. "I always wanted to heal people with hemophilia," he says.

In addition to his studies, he devotes time to the newsletter he founded, which has expanded from two pages to six. Despite relatively good health, his problems are far from over. He faces an average of six to eight infusions per month at a cost of $600 each.

Massie, whose son's hemophilia launched her on a campaign to raise awareness of the condition more than three decades ago, is particularly proud of the success of the enthusiastic students in the computer class, founded with the support of a private donor. "I concentrated on what we could do to help these kids become self-sufficient," she says.

The confidence boost seems to be taking hold. Last year, the group qualified for the country's computer olympics in Moscow.

Despite these gains, economic uncertainties and stricter customs regulations raise other hurdles. Russian suspicion that the West was sending defective products in its aid efforts prompted a new requirement that all medicines have no less than six months left before their expiration dates. Much of the factor sent in the past was near or just past its expiration date, although Massie says it can still be effective months afterward.

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