Living with genetic disease

Being diagnosed with a genetic disease, and one that has no cure or treatment, is probably one of most heart-wrenching news ever. To be told that one has Alzheimer’s disease for example, or one is a very high risk or diagnosis of some incurable form of cancer, what does one do? How does one handle it?

I read about Christina Applegate’s diagnosis of breast cancer, and her decision to have double mastectomy because of the high risk she carries. She kept it hidden from everyone but the closest family members and her make-up artist. I read of it weeks after her second surgery, and I have to admire her for what she did. She claims to be 100% cancer free after the surgery, and that is cause for a public applaud.

Well, new findings at the National Institutes of Health reveal that those who discuss their condition with friends and family, and caregivers who feel some measure of control, adapt best. Of course, it is a different ballgame with celebs and high profile names because they want more privacy. But for us who might be going through a diagnosis or know of our risk for certain diseases, genetic counselors will play a huge part in helping you and your families cope and understand the condition. I personally think that the first question a sincere family member asks is  – what can I do to help?