Maintaining Perspective: A Personal Account of Addressing Familial Risk

If you are at a genetic risk for FTD it means you will not only experience the pain of watching a loved one suffer with the disease but you will also experience the fear, confusion and grief of knowing you could one day suffer in the same way. I know this because my father had FTD, his mother and siblings had FTD, and there is a 50 percent chance that he passed the gene to me.

To know that you have a genetic risk can be hard to accept. I felt afraid and I constantly thought about the “what ifs.” What if I have it? What if I don’t?  How will this change my life? My concerns of having the gene started to consume my daily life and I was constantly haunted with feelings of worry, doubt and fear. Eventually I started to assume that I had the gene and that one day I would get FTD just as my father did.

I knew that even if I had the mutation, chances were I wouldn’t show symptoms for many years. But my fear took over the rational part of my thinking. Soon I started worrying every day if I was having little symptoms or if my personality or behavior was changing. I started to question my future and redefine what that word meant to me. I convinced myself that I didn’t want to get married or have children because I was so scared of changing, getting sick and hurting my family.

When I didn’t feel like hanging out with a friend, or if I didn’t laugh as hard at someone’s joke or when I had fights with my boyfriend I wondered if it was the early signs of FTD. It made me feel very insecure. I began to wonder who would want to fall in love with me if I posed a risk of having such an awful disease.

No matter how hard the people closest to me tried, they could not understand what I was going through. At times my genetic risk and fear made it difficult to be there for my father when he was getting sick. Watching him get sick not only made me sad but it also made me more afraid. It made accepting the situation feel impossible.

I went through a period when I was mad at my father for having the gene and for possibly giving it to me. I was mad at my mother for marrying my father and having me without knowing there was a genetic risk involved. Of course, deep down, I knew it was no one’s fault but at times I couldn’t help but feel angry.

I carried a weight that I cannot describe. I could not truly live during those years because I spent so much time fearing what could happen. I felt alone, but I was wrong. Thankfully, I began to turn my thinking around

What I learned through that personal experience is that we are not alone. Genetic counselors can provide families with guidance and up-to-date information on research advances. There is amazing support for those who have a genetic risk for FTD. There are many people who have experienced those same emotions. I learned it is okay to feel afraid. It is okay to feel angry and even resentful. Most of all, it is vital to keep in mind that everyone is at risk of illnesses or having an accident, but we cannot let those fears consume us.

To be at genetic risk for FTD or any disease is scary, but there is hope! There is hope that you do not have the FTD gene. There is hope that medications to reduce or slow down FTD symptoms will be developed as doctors learn more about the disease. There is hope that one day there will be a cure.

If fear overcomes you, focus on the fact that you have your life ahead of you. FTD symptoms typically appear when an individual is in their mid-40s to 60s. A genetic risk does not mean you should stop living now. A genetic risk means start living now. The feelings you experience by knowing you have a genetic risk give you the opportunity to have bigger dreams. The truth is that you have today and you can appreciate today in a way that someone who has never been told they have a 50 percent chance of having a serious illness can.

Knowing you have a genetic risk truly means only one thing – it means you have a choice. Will you let what could happen control your life or will you live your life regardless of what could happen? It took me a long time to figure this out. Once I did it made my situation easier to accept. I started looking at the risk as an opportunity – an opportunity to appreciate and value my life in a way none of my friends did. I started to appreciate the little things that many people take for granted. I appreciated every memory I had, my ability to talk, walk and have relationships with family and friends. I appreciated my life.