Long time since I have posted on here, but I was hoping to get some input into thought process for getting tested young. My daughter is 17 and wants to test at 18. My husband had a visit to HDSA center of excellence and two genetic councilor students were in the room and all agree that if she truly wants to be tested at 18 I should start counseling with her know.

The doctor said that the younger generation is more proactive about health and want to know what they may face so they are more likely to get tested and do it young. Dr Joanne also said that with all the new stem cell therapies that this generation of kids will not live like my husband who is at least fifteen years into his symptoms if not more. Between stem cell and Crisper I am hoping she is right. She also said that the younger someone knows that they are at risk the better for treatment because they can be monitored and get treatment before symptoms are physically visable.

This is such a new thought to me, that stem cell can prevent and prolong symptoms, and that it is better to know now than later.

I personally would rather her life her life unknowing and when she wants to settle down to find out, I think no marriage and no kids until you know your status and no kids if you are positive. Not that I can do much to change her mind, so I am just looking for some input from the young adults who have gone through the process and declined.

MRO,

I'm neither young nor at risk, but there is someone who might be the greatest resource for young people in the world. His name is Matt Ellison and he has a wonderful website at [en.hdyo.org] I've met Mattie in person several times at conferences and he is a delightful young man.

Will

I second Will's suggestion of having your daughter get in touch with the HDYO folks. They are a great resource for kids and youth affected by HD.

Another group I would steer her toward is the National Youth Alliance with the HDSA. This is a member-led subsection of the HDSA. The leaders have recently done education days in 3 locations around the states and my kids and I attended. It was wonderful to see these 20 something guys and gals telling their stories, some +, some -, some ?, all stressing the value of that very personal decision. Regardless of their gene status, they are living their lives positively and fully with each other's support.

I know they do a monthly conference call to check on each other, they have a private FaceBook page, and a large cohort gets together each year at the HDSA conference (which, for NYA members, your daughter can apply for a scholarship to cover full travel and conference cost) I feel the NYA is why HDSA is moving forward and making such incredible strides in advocacy, fundraising and support for those under 30.

Have her check it out today
PattyC