Over the last six months, I have engaged in many conversations with my peers in the Huntington's community. These conversations took place via Facebook, Skype, FaceTime, telephone, and in person. I spoke with fifty community members pertaining to the following topic:
Huntington's disease statistics in America.
I read the following statement to each individual:
"Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease." - HDSA (http://hdsa.org/what-is-hd/)
After reading this statement to all fifty individuals, the response was overwhelmingly clear - every person disagreed with this current statistic.
I furthered the conversation by asking each of my peers to provide me with their opposition to the current statistic. I stopped taking notes after several replies. Not surprisingly, the responses began to overlap. I've always questioned the math pertaining to the current statistic, and it was more than obvious that these fifty individuals concurred. I then typed the following into my web browser and shared the results with the fifty individuals:
How many Americans have Huntington's disease
Note the date: Jan 1, 2000. To say the least, my peers were not happy about this. Many had already seen this stat over the years, but for some, this was their first time.
I believe we should examine something of great interest from the Huntington Study Group (HSG) - HD Insights "How Many People Have Huntington's Disease?"
"There are two ways to answer the question “how many people have Huntington disease (HD)?” The first is by determining the prevalence (i.e., the proportion of a population that has a given condition at a particular point in time), and the second is by determining the incidence (i.e., the number of people who will develop a condition over a defined period of time) of HD. Prevalence answers the question of “how many people currently have HD?” and incidence answers the question of “how frequently are people being diagnosed with HD?” Research suggests that the answers to both of these questions are changing and perhaps increasing. These changes will have important biological, economic, and social implications for the future." (http://huntingtonstudygroup.org/hd-insights/how-many-people-have-huntington-disease/)
I note this portion of the HSG's Insights publication because it directly reflects the feedback and concerns I received from the community members I interviewed. Since I began my advocacy mission in 2009, these statistics continue to unnerve me. For years, patients and caregivers continued to struggle with this statistic. In my investigation, the concern from the group was evident:
So many people we talk to on social media have loved ones who are turned away from doctors because they show no chorea. What about the emotional and psychological aspects of this disease? Depression, anxiety, and mood-swings are problematic for so many who have not been diagnosed, which directly affects their ability to stay employed, drive a vehicle, function while out in the community, or within social circles. It was also evident that the family unit also deteriorates significantly without a diagnosis.
I found the following information on the Huntington's Disease Society of America (HDSA) website:
"HDSA has been working with the Social Security Administration (SSA) for several years to achieve two goals:
Update the neurological listings used by the Social Security Administration to include more comprehensive symptoms of the d