My purpose in blogging is to nurture a community of individuals, couples, and families that have learned that they are carriers, or might be carriers, of a genetic health problem.
In some cases, people find out that they are carriers because they have had a child with a genetic disorder and are tested because of that. Or, they might be siblings or cousins of a child affected with such a condition. In many states, newborn babies are being tested for more and more diseases with a genetic basis. When one is identified, the baby’s parents might learn that they, or one of them, is a carrier of this condition. In addition, DTC testing (direct to consumer) is becoming available, so people might find out that they are carriers that way.
There are many websites and organizations devoted to particular hereditary disorders. The Genetic Alliance lists over 500 organizations, many of which address an individual genetic condition, at http://www.geneticalliance.org/view/organizations/all . To my knowledge, however, there is currently no resource focused on the issues people must face when they discover that they could pass on to their future offspring a condition ranging from troublesome to lethal.
If you find yourself in this situation, some of the themes that might concern you are:
• Should I risk having children (or more children)?
• How can I try to have a child that will not be affected by this disease?
• Is there anything immoral about my taking a chance?
• What if it seems like others in my family feel differently about me now?
• What if I feel differently about myself?
• Will it make me less desirable as a partner?
• Is it anybody else’s business that I am a carrier?
Some of the things other people ask themselves in this situation include:
• How does this news affect the way I feel about myself, my self-esteem?
• What does it mean to people who know me, my social identity?
• Why do I suddenly feel “less than”? How can I get rid of that?
• Can I be sure the genetic tests are accurate? Maybe it is all just a mistake.
I will discuss issues like these and I invite you to listen and to participate by posting comments or asking additional questions. I’ll make an effort to find and share articles, books, websites, and other resources that will be helpful to you. You can stay in the loop by checking in here at http://mybluegenome.com or by following me at http://www.Twitter.com/mybluegenome .