From first learning about HD in your family, and through the course of living with the disease day-to-day, most find that friends, co-workers, and even some family members aren't willing to discuss your life with HD in any great detail.
Whether you are At-Risk, are HD positive, are a caregiver for a person with HD, or a caring friend, there are times you need support for your questions, concerns and even a little humor. The first place to go to is your local HDSA Chapter or Support Group. However, most of them
only meet once a month or less. When you need support daily, or at 3AM in the morning, more then likely someone will be there for you on-line! There is always someone with a little more experience in living with HD who can offer you advice, guidance or just a shoulder to lean on when there isn't one close by.
A word of caution: although some professionals monitor these groups, the members typically are not. Most are family members, many with years of HD experience. Information provided to you on medications or treatments options for HD should be discussed with your personal physician.
If you are concerned with privacy issues, it is recommended you sign on to these (free) lists with a code name. Temporary email addresses can be obtained from places like www.yahoo.com or www.hotmail.com for this purpose.
That being said.....I hope you'll consider joining one of these groups! I could have never made it through my years of caring for Kelly without the support given to me on Hunt-Dis.
