Mark Jacobsen, Ph.D., Jane Paulsen, Ph.D., Athena Diagnostic executives

The session, which was chaired by Jane Paulsen, Ph.D., and moderated by Mark Jacobson, Ph.D., included presentations by HD family members. All of the presenters received standing ovations for their insightful talks.

Phil Hardt, a frequent contributor to HDAC, spoke about the needs of those with HD. His presentation will be available on this site soon.

Frances, a caregiver to her late husband with HD, spoke next. Her mother in-law had had HD but a doctor had erroneously told her husband that his chances of getting his mother's disease was only one in a million. She lost her husband twelve years ago and now she knows that her three children have the gene. Frances agreed with Phil about the difficulties of getting Social Security disability for people with HD because of uneducated doctors. Lack of awareness causes many problems. She related an incident in which her daughter was suspected of being intoxicated and prevented from driving although she had not been drinking her doctor said it was safe for her to drive. Frances followed up with the police department, the school, and the mayor and the result is a training to be held for police officers on HD as well as a refresher course on the Americans with Disabilities Act. She urged greater education and awareness so that people with HD can live more positively until the cure.

The facilitator commented that Frances had written something profound to him that he wanted to share: "Hope is what gives us the strength to face each day with courage."

Pam shared her decision making process about testing. The disease tends to have onset in the early to mid thirties in her family. When her thirtieth birthday approached she was very concerned. Her mother was quite ill at that point and she had to deal with grief as well as caregiving responsibilities. She researched HD and testing and received genetic counseling. She decided not to test. She decided she preferred ambiguity to a possible positive result. She had one caution for those at risk: "Test or no test - sign up for long term health care insurance."

Disclosure is an issue for at risk people. She is open with friends and family members but not with doctors and insurance companies. Dating is a tough topic. She advised people not to discuss your gene status on the first date, but to wait for a while and see if there's going to be a relationship.

She also shared her coping mechanisms for living at risk. Support - in person and on the internet - is very helpful. Participating in research like PHAROS is also helpful because you are helping to bring about an eventual cure. Helping with awareness is also a positive experience.

Taking the test is an individual decision. There is no right and wrong decision, only what is right for the individual.

Lisa also spoke about living at risk. She is a twenty year-old college student. She commented on how pleased she was to see so many young people attending the conference this year.

Young at risk people help in caregiving but they are also children with school and other responsibilities. She had originally planned to test at eighteen but then decided not to after meeting other young people who had decided not to test and were comfortable with that decision. She supports leaving the minimum presymptomatic testing age at eighteen. The future is uncertain but that is true for everyone. The future is also bright because there's much hope in research. "Plan as if you have the gene, but live as if you don't."

Dr. Paulsen asked Lisa what can be done to help young people. Lisa says that it's helpful to stress the hope in research and to be open with young people about the disease. Parents don't need to share every detail but they should answer children's questions.

- published June 30, 2001
by Marsha Miller, Ph.D.