My cynical side is showing again.

Was I supposed to climb a mountain or something for some ailment awareness? I didn't. But apparently a lot of people do that kind of thing. You can find countless story about another person who climbed a mountain, ran a marathon, bicycled some long distance or did something significant to raise awareness for an ailment.

How does climbing a mountain help with an ailment? What are you doing on a mountain top that could do anything to help someone with that ailment? Other than let the person with the ailment feel disappointed that they could never do that any more? Please explain.

I didn't do any of that. I would never do any of that. Physically I can't. And emotionally I do not think those efforts are much needed. Honestly we do not need any more awareness of breast cancer. Period. For my other ailments, maybe some awareness could help. But awareness doesn't do squat.

What does help is research and treatment.

If you want to help with an ailment on a big level, raise some money for research and treatment. If you want to make the news headlines for doing something, raise a lot of money, send out a press release and invite the local media.

Or if you don't want to make any headlines and can't afford to spend any money, spend some time with someone who could use help. Is it a ride to a doctor appointment? Picking up their groceries? Mowing their lawn or raking their leaves? Or if you can't do any of that, drop by and chat or call them on the phone.

Skip the awareness crap and efforts, figure out how to go direct to the person coping or to research and treatment. Awareness doesn't do crap.

World Arthritis Day

I missed it. It was yesterday, October 12. Obviously it must have been  hidden behind a cloud of pinkification.

Let me be clear I didn't even know there was a World Arthritis Day. And according to their website, there were only four events in the US and six in North America. The rest were in Europe and Middle East.

I think if there was one giant calendar of all the awareness days/months, it would probably contain a million event. The problem with these 'awareness' events is that there are just so many. Do we really even need them?

I like the idea behind them - to raise the awareness for an illness or ailment. And to help fund research for better treatment options or cures. But when every day is a different awareness day they become to blur together and lose their emphasis.

With my list of ailments and interests, I have too many to choose from and pretty much ignore them all. I do voluntarily attend specific events which focus on fundraising or awareness for different ailments but do not choose to make a big deal out of any one.

This is a case where less is more. If there were many fewer, I would probably be able to find a couple that fit my interests.

A cancer warning

Thyroid cancer has the highest increase in incidence in the US of all cancers. Thyroid cancer is one of the so called 'good' cancers as it has a 95% 'cure' rate.

However here are a few facts of warning:

• The 'cure' includes the removal of the patient's thyroid which results in a life time dependence on a synthetic replacement hormone. Your body 'sort-of ' runs correctly. Some people never can get their dose correct and live in constant imbalance.
• It hits the young and old - from toddlers to seniors. And its increasing in young patients to the same prevalence as Non Hodgkin Lymphoma in teenagers. 
• No one knows why it is increasing in incidence so strongly but radiation exposure is suspect.
• When I was diagnosed with thyroid cancer I think there were about 12,000 cases nationally. In 2014 33 years later, there were 63,000 cases. That is more than the number of cases of rectal cancer, all types of leukemia, or all types of oral cancers, or pancreatic cancer. Haven't you heard of those?

So its not a good cancer if it affects so many. And its increase is not explained. Most other cancers are decreasing in incidence but not thyroid cancer. There is no awareness for thyroid cancer. Visit thyca.org for more information on the disease.

Can you cure ALS with a bucket of ice water over your head?

Is it the same as putting a pink ribbon on breast cancer? Don't get me wrong here, I think the ice bucket challenge is raising awareness of a horrible disease and it is increasing donations to a worthy organization (unless you are Catholic and have a problem with the stem cell research they advocate). Before you grab your big bucket of ice water and are thankful this challenge is going around in August and not in January, please take a moment to think.

Is what the ice bucket challenge is doing for ALS more than what a pink ribbon does for breast cancer? Seriously.

For everyone who wore a pink ribbon or did the ice bucket challenge can you please tell me three specifications on each disease? Statistics, or life expectancy, or number of people living with it? What does ALS stand for - spell it and pronounce it without looking it up?

While awareness is great and donations are even better, we all need to step out of our little bubbles and learn about these horrible diseases - and there are many more - and what else can be done besides painting the world pink or pouring ice water on your head.

And is this just a passing fad? Or will it be an annual event every summer where the world pours ice water on their head to make a horrible disease look easy and then everyone dries off before pulling out the pink stuff?

Over-Awareness, Focus, Hype and Expectations

The media did a damn good job about making sure we all knew about Angelina Jolie's double mastectomy. She went public, if I recall correctly, to raise awareness about the BRCA gene. I respect this decision and congratulate her on a brave decision to take something very personal and make it public.

In a recent survey, three quarters of us did know about her surgery and decision. Considering that it happened less than a year ago and and was much less significant than a war, earthquake, typhoon, etc 75% is a pretty good number.

I would also like to point out that all those years of breast cancer awareness and pinkification have allowed this to become a major news topic and not get buried under the carpet or something. However the information stops at awareness.

Only 10% of those asked in the survey knew about Angelina's BRCA diagnosis and why she had the mastectomy. I think I am okay with this. If you are not embedded in the breast cancer world you can't be expected to know chapter and verse about the genetic causes of breast cancer.

For example, I know there is some family genetic trait that leads to Huntington's disease and don't really feel I need to know more about it because it does not affect me directly. If it did, I would be up on it and have read all the research.

I think we have reached a level of breast cancer awareness that is overdone. But I do not think we need to expect that all American's know the great details of a breast cancer diagnosis and all its risk factors. There are many other diseases and ailments that deserve more awareness and shouldn't be hidden behind a pink curtain of over-hype and over-awareness.

I do think Americans need to embrace overall awareness of a healthy lifestyle and not focus on a few diseases at a time - the ones that are closest to them and causing them the most problems.

Happy RA Awareness day, a day late

Yesterday was RA Awareness Day, the first one, so we went out to dinner with my parents because my mother wanted to celebrate. She has had RA for over 20 years. We didn't know if we were supposed to wear a special color or not.

It was also Ground Hog Day and Punxatawney Phil did not see his shadow. This lead to some discussion. Does it mean that winter is over as we know it for the year? Or does it mean it will fade away? Or do we really care because he is not accurate anyway?

RA Awareness Day did make me aware that I need to learn more about my new ailments. There is a lot I don't understand. I was attempting to reading this announcement on an important new development in the diagnosis of RA and it reinforced the thought I really do not know that much about it. Its about antibodies in carbamylated proteins (which makes me think of caramelized onions) if you really need to know.

My goal now, or another one of my goals, is to learn more about my new ailments before the next Rheumatoid Awareness Day. I have a year. There is hope.

I 'get' another day

We all know about Pinktober for breast cancer awareness. Thyroid cancer awareness month is September. Now I 'get' another day. February 2, 2013 is the first annual (I love that term - 'first annual') Rheumatoid Arthritis Awareness Day. There are more awareness days/weeks/months that I am sure I have other days I dont know about. Here is a list of all of them so you can find out your days.

"Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding."

Rheumatoid Awareness day has competition as it is also Groundhog Day. Maybe all of the RA people can crawl over to visit Punxatawney Phil.

"February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. "Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow," says Kelly Young , founder of the RPF. "It's impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.""

Well I will put a note on my calendar and remember to wear a special outfit that day. Its a Saturday, maybe we will go out to dinner. Heck, maybe we could have a party.

Citation: Disabled World News (2013-01-23) - Establishment of Rheumatoid Awareness day of recognition to be held each year on February 2: http://www.disabled-world.com/disability/awareness/ra-day.php#ixzz2ItF25Q00