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Down syndrome families hear from experts

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Family members of people diagnosed with Down syndrome can benefit from understanding medical issues that affect their loved ones' lives, said specialists Dr. Peter Bulova, left, and Dr. Dennis McGuire. They spoke at a Saturday conference at the Roswell Convention and Civic Center. (Lisa Dunlap Photo)

People with Down syndrome can often have a difficult time letting family and others know what they are experiencing, so problems that could be caused by medical challenges can wrongly be thought of as bad behaviors, experts told families and people working in the field at a Saturday conference.
Dr. Dennis McGuire, Ph.D., a social worker with a consulting practice, and Dr. Peter Bulova, a medical doctor and an associate professor of general internal medicine at the University of Pittsburgh, were the keynote presenters at the first medical conference offered by the Down Syndrome Foundation of Southeastern New Mexico. The event occurred at the Roswell Convention and Civic Center.
“Sometimes medical problems present as behavioral problems,” said Bulova, “and often (Down syndrome patients) might not be able to explain what the problem is.”
Common examples, he said, include sleep apnea being seen as someone having lost interest in activities when, in fact, the person is exhausted from lack of sleep. Some people have pain and difficulties with their feet due to gout, but they won’t express those problems and instead will stop walking. Other medical disorders might stop people from going outside to avoid heat or light.
Bulova said his presentation focused on “what are the unique medical issues for people with Down syndrome and how to empower families to work with doctors to address them. A little wisdom goes a long way for many of these families.”
Based on statistical data, there are an estimated 700 families dealing with Down syndrome in the nine southern New Mexico counties covered by the local foundation, said Executive Director Bethany Johnston. She said the foundation actively works with 140 people dealing with the medical condition, defined as a chromosomal abnormality that results in intellectual and developmental difficulties.
McGuire, a consultant with various Down Syndrome groups who once served as director of psychological services for the Adult Down Syndrome Center at Lutheran General Hospital in Chicago, said that social workers often work alongside medical doctors, acting a bit like detectives, to find out what the real issues are for people diagnosed with the syndrome.
“We want people to look at their family members in terms of strengths and weaknesses,” he said. “There are certain behavioral characteristics that can help families understand their sons and daughters better and help them think more about their strengths rather than think just about the problems.”
McGuire said that it often helps families to hear from professionals who have dealt with hundreds, if not thousands, of people with Down syndrome that what families are experiencing or observing is not unusual.
“These are beautiful people, and we want to recognize all their gifts,” McGuire said, “and I think the families know that, but they are also vulnerable people and we need to help them not be so vulnerable.”
Johnston said that this first conference had some unexpected difficulties due to bad weather in other states that prevented some planned speakers from arriving, but she said the local foundation most likely will conduct another medical conference in future years.
Bulova said that he thinks the conference fulfills a need.
“This is not something that families themselves typically do, hold a medical conference,” he said. “I wish the medical community would do that, so I commend the families’ initiative.”
Funding for the conference came from the Global Down Syndrome Foundation, United Way and the Con-Alma Foundation.
Senior Writer Lisa Dunlap can be reached at 575-622-7710, ext. 310, or at reporter02@rdrnews.com.