To test or not to test? The gamble...
Many people unfamiliar with HD wonder why anyone wouldn't want to know about their genetic status. Surely people want to avoid passing the gene on. Surely you'd want to be able to make plans. But the reality is that finding out - without a doubt - that you will develop the "cruelest disease known to man" is not an easy decision.
Alys Bloch and her brother decided to go through the testing together earlier this year. Both tested positive for Huntington’s Disease. “We chose to get tested because we were both ready. [My brother] was ready to think about starting a family with the woman he had been dating for a few years. I decided we should rip it off like a Band-Aid and get all of the pain done at once.” Alys says she feels it is a blessing to know her HD status. “The bright side is [my brother and I] have vowed to have kids in ways that stop this disease right here. We are done with this monster in our family.” Adoption and in-vitro fertilization (testing embryos before implantation) are possible options for Alys and her brother.
The decision to test our son, Lacy, was made when we began to realize that the changes in his personality and health HAD to be Huntington's Disease. We had known when we adopted him that HD ran in his family - his maternal grandmother had the disease - but we put this knowledge to the back of our minds and we worked to support Lacy in being the best he could be in all areas. We were advised not to seek testing when he was young, and this was a great advice. The specter of HD would have clouded everything we did, and every push to help him rise to his best self.
However, ours is not a typical story. Alys, Lesia, and Drew have different takes on the testing issue. The decision to test is a personal one, and we cannot ask those at risk to make decisions that may alter their lives in ways they cannot even imagine. A person who decides to be tested for HD must undergo months of counseling to determine if they are ready to hear the results. The incidence of suicide among those testing positive for HD is high, especially in the early months and years of diagnosis. Doctors will not put someone through the agony of testing if the patient is not ready emotionally and mentally to know their genetic status. Even after a person is tested, he or she is given a choice to hear the results or to leave them sealed for only the doctor to know. These results are not shared with anyone without a patient's permission.
Lesia Fry has chosen not to be tested. “I am afraid to know. I have a daughter who is 16 and I just want her to be a regular teenager without worrying about me or about herself. There is no cure so why [be tested]? If I have it, it will soon be clear and I will deal with it then. I am 44 and seem to be symptom free.”
Drew Earls was conflicted about testing. “My wife wanted me to get tested before we had kids, but I wasn’t ready. At that time pre-existing conditions with insurance was a problem.” However, the idea of testing – and knowing – was also frightening for Drew to contemplate. Eventually, Drew felt he was ready to cope with knowing his status. “I finally felt spiritually strong enough to deal with the results.” Drew’s test was positive. He and his wife, Kellie, have two young children who are living at risk.
“To somebody who does not know about HD, God bless you,” Alys says. “I wish that was me. I wish that was me so bad. Please educate yourself and others on diseases [like HD] that are under the radar.”
For Drew, it’s the research he is most positive about. “Research is very important.” He is counting on a cure for his family.
Lesia sends this message to those who do not know much about HD: “This disease and its effects on families needs to be told. I don’t know how to educate people more, but I would like to. I just can’t get into it that much cause it depresses me so much if I do. It makes you feel helpless. My dad died from cancer at 52. I would welcome cancer, or any other disease in my life, before HD. That says it all if you ask me. I beg to get cancer, diabetes, whatever over HD.”