disorders and special needs

May 30, 2006

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[font=Verdana]I'm Laura and a Genetic Counseling student at [/font][font=Verdana]Arcadia[/font][font=Verdana] [/font][font=Verdana]University[/font][font=Verdana] in PA. Over the past year I've been interning at various medical centers as part of my program and have come across a really large number of foster care children with genetic diseases and syndromes. It was upsetting to me because it seemed like the foster parents were frustrated with the medical system or foster care system because they weren't getting the genetic resources they needed about their foster child, and felt like they were "in the dark" about their foster child's condition. It seemed like if they just had a foster child transferred to their care, the doctors and even genetic counselors assumed that the new foster parent already knew about the genetic disease and what to expect, when in fact this wasn't the case at all. [/font]

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[font=Verdana]When I realized this I wanted to learn more so I started looking at the posts on this forum and found that people were often confused about a certain diagnosis they were told that their foster child had because it wasn't explained to them and they wanted answers. I feel like there is a missing link somewhere out there and want to help out. Maybe I could present this idea (if I'm on the right track) to the National Society of Genetic Counselors and get foster care agencies to employ genetic counselors as an accessible resource for foster parents. I think it could be very important because in addition to genetic disease/syndromes, often chronic diseases are also genetic, and even childhood cancer has a genetic component (so much of diseases and disorders are genetic and people don't realize it). Also, a lot of the time children with special needs have a genetic condition as an underlying cause.[/font]

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[font=Verdana]Genetic counselors are trained as medical genetic professionals that help to comprehend medical facts including diagnosis, probable course of a disorder, and available management. We also explain recurrence risks, inheritance patterns (how did someone develop this disorder), and provide additional resources and support for specific disorders and diseases.[/font]

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[font=Verdana]Would anyone be interested in explaining their experience and concerns? I'm also thinking about doing my master's thesis on this topic because I think it is very important. I also want to try to help by answering any questions you all have about your foster children. (I'm still a student though so I'll try my best!)[/font]

[font=Verdana]-Laura[/font]