- MDA’s Genetic Counseling Webinar, which occurred Feb. 22, 2012, covered the basics of genetics and genetic testing, and answered questions from participants.
- Knowing your exact genetic diagnosis has advantages in terms of family planning and testing of other family members who may be presymptomatic, or may be carriers of the genetic mutation.
- An exact diagnosis also improves disease management by alerting doctors to associated health problems, such as cardiac issues.”
There is even a Frequently Asked Questions section that addresses:
- What happens at a genetic counseling session?
- What are the limitations to genetic testing?
- What does it cost?
- When should unaffected family members be tested?
- How can I find a genetic counselor who is familiar with my disease?
Link to YouTube presentation: https://www.youtube.com/watch?v=JvkvkzBjk3A
Back in the early 80s my entire family was tested. At that time there was no test for Kennedy’s Disease and when the results came back three of us were shown to have Familial ALS. There was no genetic counseling offered at the time so we were left with a large void as to what does all this mean. About fourteen years later I was given another DNA test and officially diagnosed with Kennedy’s Disease.