Ukrainian Diabetes Project continues education efforts in Ukraine (10/25/98)

Ukrainian Diabetes Project continues education efforts in Ukraine

by Maria Lewytzkyj

SANTA ROSA, Calif. - Four representatives of the Kyiv Charity Fund Diabetik visited California in August as part of an effort by the Ukrainian Diabetes Project (UDP) to continue diabetes education in Ukraine. After a weeklong effort trying to obtain U.S. visas for the four representatives in Kyiv, Andrea Skrypka, UDP director/founder, and her husband, Volodymyr, were successful and carried the project's mission a few steps forward.

Based in Santa Rosa, the UDP works year-round developing educational material, planning an annual bike-a-thon fund-raiser to continue setting up diabetes educational clinics/camps in Ukraine, and promoting contacts in Ukraine to promote well-being for children with diabetes.

The UDP brought the President Natalia Vlasenko and Vice-President Natalia Manzheley of the Diabetik Fund endocrinologist Alexandra Sologub and a translator, Olga Prokopenko, to America to witness first-hand how the concept of a diabetic family camp is realized. The camp they visited is sponsored by the Diabetes Youth Foundation (DYF).

As the four representatives learned during their visit to a family camp in Kings Canyon in the lower Sierra-Nevada range, although there is a lot of work ahead, it is possible to envision that diabetes as a disease in Ukraine can someday be seen not as a disabled way of life for children.

Ms. Manzheley stated that part of the fund's beliefs were reaffirmed on this visit: "This disease knows no country, nationality, skin color or age." In Ukraine there are more than 2 million diabetic patients, whose number in the last 10 years has increased by 10 percent, according to the fund's research. Of these, 100,000 patients make insulin injections daily.

"What we got to see at Bearskin Meadows Family Camp was great. We saw diabetic children and their parents living with diabetes. In the U.S., diabetes is a lifestyle, not a disease," she affirmed hopefully.

Ms. Vlasenko knows intimately the hardships associated with raising a child with diabetes; she has done so for the last 10 years. So does her vice-president, Ms. Manzheley, whose family almost fell apart from the strain diabetes caused in her family life.

The chance to see parents join their children, from the very young to teens, in learning about their children's diabetes was a novelty for the Kyiv visitors. The Family Camp in Kings Canyon schedules several programs for parents, during which they acquire knowledge about diabetes, stressing how self-control and monitoring enables diabetic children to live normal healthy lives.

Ms. Vlasenko noted, "These children (at Bearskin Meadows) will feel good about themselves. In Ukraine, children often feel ashamed of having diabetes."

The way camps for diabetics are run in the U.S. and Ukraine could not be more polar, although both objectives are the same. "In Ukraine, diabetic children at camp are obligated, if they are to improve their health, to stay in a nursing home for children (sanitarium), sleeping in beds in very conforming conditions," Ms. Manzheley pointed out.

"It is very interesting to us how diabetic children at camp can wear sports outfits, live in the mountains, sleep in sleeping bags in the fresh air," continued Ms. Manzheley. All camps for diabetic children that the Kyiv fund organizes are held in the city.

The Diabetik Fund leaders said they hope they can incorporate the ideas they saw at the DYF camp in California into the program they have established in Kyiv. The first camp the fund organized was a huge success: the children learned a lot and formed lasting memories, while the parents found the lessons on diabetes very useful.

Medical staff and counselors at the Kyiv camp worked very hard to organize interesting group activities that were educational and others that were recreational, including a discotheque and bonfires. However, they did not have a sports program such as the one in California.

In contrast, "The kids at the Kings Canyon diabetes camp hiked to the top of Mount Whitney, (the highest peak in the U.S.), this summer. They carried their own packs filled with food," said Ms. Skrypka, president of the UDP.

This accomplishment allows diabetic children to see themselves as self-sufficient and capable of doing whatever they set their minds to. Such building of self-esteem, Ms. Manzheley admitted, is being introduced at the Kyiv camp, where organizers try to help the younger children see themselves in a favorable light.

While in the U.S., the Kyiv visitors began discussions on plans to borrow ideas from the camp in Kings Canyon and bring Ukrainian diabetic children from a traditional sanitarium setting with constant medical treatments closer to the type of camp life they saw in America.

Their immediate concern, however, is funding. "Who will help up purchase sleeping bags, pay for the site, for the food?" asked Ms. Manzheley. It is extremely difficult to find funding for such causes in Ukraine. She continued, "Every day at the camp in Kings Canyon, they served good food - always something new. Diabetic children require food six times a day."

Although some of the funding strategies suggested by directors of the DYF camp currently are impossible in Ukraine, other ideas are indispensable and will definitely be pursued back in Kyiv - including the concept of a sports-oriented family camp in Kyiv.

As planned by the UDP, the four Kyiv representatives had an opportunity to meet Ellen Simpson, the founder and developer of the Kings Canyon camp who started the camp in 1938. At over age 80, Ms. Simpson is still as energetic as ever. She shared accounts of the camp's infant stages and how it was able to develop into the family camp it is today.

Crucial to the Diabetik Fund's message back in Ukraine is that the process to hold such family camps must begin soon to encourage parent participation and interest in making diabetes only one aspect in the lives of diabetic children.

As was revealed by Ms. Manzheley, many mothers of diabetic children lose their husbands, the fathers of these children: "The mother finds herself in a predicament where she must focus most of her attention on the child. The husband is left unattended. The husbands can't handle this. They abandon the wife and children, and move back home. Self for the self."

To raise a diabetic child is an expensive situation, whether in the U.S. or Ukraine. And in Ukraine, husbands leave their wives and diabetic children in approximately one-third of such families according to Ms. Manzheley. As to whether these fathers pay child support, not many do - or can, as their incomes are too low.

"This is why the camp we saw in Kings Canyon where parents and young children are able to get interested in their child's diabetes is so interesting," explained Ms. Vlasenko. Her own husband works very hard helping her with computer work and other fund issues, as well as in raising their diabetic son. "He is very dedicated," she said with a smile.

"We are extremely grateful to the UDP, which gave us the opportunity to visit America and see the camp and meet with administration and doctors to learn from them first-hand," offered Ms. Vlasenko in thanks.

Ms. Manzheley added, "We are faced with the task of finding financing." They have a few ideas, however. It is their hope that people will gain knowledge about this issue and create a network of ideas for funding, in Ukraine, among the Ukrainian diaspora and in America and Canada in general. One idea is to organize benefit tours of musicians from the professional music school where Ms. Vlasenko works.

For further information on helping the fund raise money by organizing possible tours for these professional young musicians, or to share other ideas, contact the UDP in Santa Rosa at (707) 526-5676.

Next year the UDP plans to bring a group of Ukrainian children to the Bearskin Meadows camp. The fund and the UDP will work together to make this goal a reality.

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