Huntington's/Brain Disease

This article is based on some of the sessions that were given by Phil Hardt at the National Huntington's Disease Society of America Conference held this past June in Orlando, Florida. Phil was speaking on men dealing with HD. I think you will find as many others have that his story is compelling and inspiring. Thank you Phil for allowing us to post this on Suite 101.

Nov 17, 2000 - Julie Sando

This is a story of one mans journey with being at risk and going through the testing process. Ray doesn't hold anything back. He received his results just before I was to get my own. We shared many similar emotions. Ray is a wonderful guy and a forever friend.

Oct 10, 2000 - Julie Sando

This story was written by a dear woman whom I met via the internet and in person at the National HDSA Convention in Arlington back in June of 1999. Her story is a mother's story. It is compelling and it is heart tugging.

Oct 10, 2000 - Julie Sando

"PLEASE, PLEASE PEOPLE don't ever take the route I did. (One man's journey with testing positive. By the way he is a friend and a truly wonderful fellow.)

Oct 10, 2000 - Julie Sando

This is a place for individuals and physicians to come and explore the patient doctor relationship. It is a place to write to your doctor (without being known or using names) and share what you have found of great help from him or her or what you feel you could use in your (or your loved ones) care. It is a place for the doctor's to participate and answer back or ask questions without being known either if they wish. It is my hope in doing so we can bridge any gaps between the doctor/patient relationship and assist others in understanding what is needed or helpful in finding the best care. (Please note: This is not a place to receive advice or care from a physican. This is just a forum for writing notes about what we have and are learning in our care or that of our loved one.)

Jun 20, 2000 - Julie Sando

A honest and personal look at what really happened when I tested negative. Maybe, just maybe it will help someone else.

Jun 19, 2000 - Julie Sando

This is part II in the article on Juvenille Huntington's Disease submitted by Jean Miller who is an incredible advocate for educating the general public and HD community on Huntington's Disease (and specifically Juvenille Huntington's Disease which took the life of her beautiful daughter Kelly in 1998). The information she shares comes from the book "Living with Juvenille HD.

Jun 6, 2000 - Julie Sando

This two part article was submitted by Jean Miller who lost her beautiful daughter Kelly to Huntington's Disease 1998. She takes this information from the book "Living with Juvenille Huntington's Disease edited by Wendy Elliot. Jean and other families who have lost or have a loved one who have JHD are true warriors and continue to touch many lives. Thank You.

Jun 6, 2000 - Julie Sando

This post contains a letter to my sister who is at risk for Huntington's disease. I recently had the chance to visit both her and my mother in California. This letter was born out of a conversation that took place during that time. I was writing to her but in many ways I write it to all of you who are at risk for HD. It was written from the heart.

May 7, 2000 - Julie Sando

Absolutely heart stirring story of Marc as told to and by their local newspaper. I am in the process of getting the name for you. .....This story chronicles Marc's journey with HD.

Mar 25, 2000 - Julie Sando

Personal journal of my own testing process for Huntington's disease. It includes medical as well as personal testimony from my journal. My faith played a huge role in this process.

Mar 22, 2000 - Julie Sando

This was something I wrote within days of receiving my test results for Huntington's disease. When I wrote this I had no idea just how many others who are at risk or have tested would identify with it. Because this series of articles has to do with the testing process I thought it might be appropriate to include this.

Feb 21, 2000 - Julie Sando

This is an article on testing for Huntington's Disease. The information in this article comes from the booklet entitled, Testing for Huntington's Disease: Making an Informed Choice Written by: Robin L.Bennett, MS, CGC Genetic Counselor Medical Genetics, University of Washington Medical Center

Jan 12, 2000 - Julie Sando

This is a personal glimpse of what it means to be at risk for Huntington's Disease and includes not only personal testimony but also links to sites that speak specifically on the issue of being at risk.

Dec 17, 1999 - Julie Sando

Information about Huntington's Disease. What it is, how it is passed down, early symptoms. A beginners page if you will in understanding Huntington's Disease.

Nov 23, 1999 - Julie Sando