I have been busy the last few weeks learning so much about Huntington's Disease and more of the background information about it. One thing that has lingered on my mind the most was the discussion I had about death certificates.
If you are like me, you have never thought about a death certificate. Why should we right?
Well, I am here to share why,
When someone dies, regardless of your religion, nationality, or beliefs we will have a death certificate. As most of us know, people that have Huntington's Disease die from other various factors, such as pneumonia, asphyxiation, suicide and so on. Most doctors will place on the death certificate the reason they died and not add that the person also has Huntington's Disease. By them leaving this relevant cause of death factor off of the death certificate makes it damaging down the road because at the end of the year when they compile all of the causes of death and see only suicide - those results only support to the suicide chart, not the Huntington's Disease chart.
By having all the contributing causes of death listed, including Huntington's Disease it could impact the numbers at the end of the year to take us out of a Rare Disease status. That means that we would get more funding, have more research projects, more doctors aware of the disease and so much more.
So, in summary, when you are dealing with the end of life paperwork please be sure that Huntington's Disease is also listed on their death certificate.