FTD Awareness Week

Today marks the beginning of World FTD Awareness Week in more than 12 countries. Efforts are going on around the world to bring awareness to the disease. Today, in the New York Times, was a full page informational ad. Tomorrow mornings, on the Today show, two FTD experts will be interviewed. This exposure is wonderful, but it still isn't enough.

There is a link going around on Facebook that shows one of the presidential candidates standing among an audience. A very brave woman stands up and tells the candidate about her husband who had passed away a few months ago from Frontotemporal Dementia and the toll it has taken on her family. Her story was sad, and mirrored so many of the cases we hear of every day. The candidate had a sympathetic look and gave the woman a hug, whispering words into her ear.

The candidate then stands in front of the crowd and talks about how more money needs to be put into research. Continuing, there was a story that this candidate had approached someone (I am sorry I don't remember if it was a government official or a scientific researcher, but it doesn't really matter to the story) and asked how much it would take to find the cure to diseases. Further explanation was that perhaps a cure could be found instead of "Say, a future piece of military equipment?" This statement alone made me cringe since I think the military needs more equipment, not less, but I should not wander into my political opinions here.

The main issue I have with this exchange? Once the candidate was before the audience, the subject had changed from FTD and was now Alzheimer's Disease. The candidate heard the word "dementia" and immediately went to Alzheimer's. Just like the majority of others, all dementias are immediately thrown in to the Alzheimer's box.

How can we get it across to the world that dementia is not a disease, it is a symptom caused by disease. It is a horrid symptom and because Alzheimer's Disease leads to dementia, the conclusion is made that all dementia is AD. There are causes of dementia, too many to get into, other than Alzheimer's and FTD. FTD will remain the focus of my rant though.

Almost every time we hear about FTD, it is prefaced or followed by the words "a rare form of dementia." Of course, FTD is much, much less common than AD. Yet it is estimated that around 10% of all dementia cases are caused by FTD, not by FD. That is not so rare to me. That means if you line up 100 dementia patients, at least 10 of them suffer from FTD. If you line up 100 people who are sneezing and coughing, it just might be likely that 10 of them suffer from allergies, not a cold. Does that make allergies rare? Not in my mind. Again, the symptoms are not those of just one illness, just as dementia isn't.

I won't complain about hearing about "FTD, a rare form of dementia" though. At least it is being talked about. I will be bombarding my Facebook page with info each day of this World FTD Awareness Week. Hopefully, some of my Facebook friends will take the time to read some of them and not block me to get rid of my pestering.

Oh, by the way, guess what other "world awareness week" it is? You guessed it, Alzheimer's Disease! We can't even get our own week!