When, What and How?

There is a question I am often asked and one that I continue to struggle with because I am not sure there is one right answer.  I believe there are far too many dependencies to say what, when and how.

The question:  “When should I tell my daughter or son that he/she possibly has the defective gene?”



In my opinion, there is no particular age that anyone is fully ready to hear this news.  I believe a parent should wait …

1. until symptoms appear (in the case of a son),
2. or if a son or daughter start discussing having children with their spouse,
3. or if a treatment is made available and the earlier a patient begins treatment the slower the progression.

Prior to that, what is the value of discussing this issue?  It will not change anything and will probably just make the son or daughter worry about something needlessly.

Once you think you have the above answer, you next have to tackle, “How much should I tell them?”  What level of detail is important at this time?  Should I really get into the disease or just provide an overview and be ready to address additional concerns?



Also, it is important to consider how your daughter or son might receive the information (maturity level).
From there you can drive yourself crazy with other questions including …

• Do I say “possibly” (or a 50-50 chance) even if you are certain they carry the mutated gene?
• Should I provide additional reading material on Kennedy’s Disease or sit with them as they search the internet for information and answers?
• Should I discuss my pending conversation with a genetics counselor asking for guidance as to the best way to explain the situation?  Or, do I break the news while we are both sitting in front of a counselor?
• Should I recommend testing or have them wait until they want to know for certain?
• If they do decide to be tested, how will this information impact their health insurance and employment now and in the future?
• If they son or daughter plan on having children, do I provide information on prenatal testing or schedule an appointment with a genetics counselor?

The above are just some starter questions.  I am sure there are more and perhaps some that are more important.

As a parent or potential parent, your opinion on this important subject is important.  Let other readers know your perspective and reasoning.  It just might help others when they wrestle with these questions.