It's never easy to raise awareness of a rare genetic disease and when my husband was diagnosed with Huntington’s Disease (HD) in 1992, we knew very little about it other than there was no cure, and only some medications were available to help keep symptoms under control. In 1998 and 1999 we had more devastating news that our daughters Tracey & Julie had both inherited the HD gene and would become symptomatic at some stage.
It was then we connected with Huntington’s WA and that was the beginning of a more than twenty-year relationship of support and connection with other HD families.. Like ours, some families were dealing with multiple family members at various stages of the disease. We soon realised how many families had chosen to keep it a secret within the family, and how little the extended community knew about HD.
Wanting to create more awareness of HD, it was on 6th August 2000 that Tracey and Damon left Perth on their motorbikes to begin their 6 month Huntington’s Awareness Ride around Australia covering over 31,000 km. At this time there was no social media so the campaign was aided by connecting with other HD Associations around Australia, and an intensive media push which included 86 newspaper articles, 61 radio interviews, 14 newsletters, 21 TV appearances. Also speaking at schools and community groups, universities, HD community members, medical practitioners and many total strangers along the way.
Here we are 20 years on with still no cure for this devastating disease. There have been some breakthroughs in research so we can only hope a cure will come one day for future generations. In no way have the last 20 years been a “smooth ride” but life is full of challenges as we know while currently experiencing the Corona Virus. We have, and still try to make the most of the good days, to deal with the bad days as best we can, to acknowledge and care about other families dealing with difficult times and continue to create awareness about Huntington’s Disease.
You can view the highlights of Tracey's journey here or copy and paste the link below.
Article shared with permission of Ann Jones.