Wednesday, March 2, 2016

My Angry Rant for Rare Disease Day / Autoimmune Disease Month

February 29, 2016 iwa Rare Disease Day. I think, I hope, it's just a coincidence that it's leap day. But maybe that's more appropriate that people with a rare disease get a day once every four years.

I have Acute Motor Axonal Neuropathy. It is a rare variant of a rare disease called Guillain-Barré syndrome. I'm told only a few hundred people in the United States, a country of almost 350 million have the same condition as me.

It doesn't make me happy to have a rare condition. In fact, I have a lot of opportunities to be angry. I get angry when I see a TV commercial telling me to ask my doctor about a drug that I don't need. There's no magic pills for me and no pharmaceutical company is gonna make a lot of money developing one. It angers me to see a TV ad for a drug that will cure my constipation because I take too many of a certain type of painkiller. I get angry when I see a commercial for a lawyer telling me I could sue someone. There is no lawsuit for me, nobody did anything wrong.  I am definitely not a cute kid and would never pretend to be a wounded warrior. It won't make me happy to toss a football around with some quarterback before I die and I definitely don't need to go to Disneyland.

I get angry when people "run" for the disease that has the certain colored ribbon. That doesn't help. But none of that stuff defines me, as I was angry about everything before I got this disease.

I used to work organizing running races. A big chunk of those races with charity events. People would show up in their special colored shirt and think they were running a race but the important thing there was that they raise money for charity. Some money went to charity, but a lot of it went to the people organizing the event. I think, I hoped that some money went towards research or helping people overcoming a terrible disease. I always hoped that in the end the charity got more money than it would've if the race never existed. But I was never really sure. I'm not telling you not to go run the race for the blue ribbon disease. Because if you do some more money is probably going to research and care for people who have the blue ribbon disease. But the emphasis is on some. 

A few years ago one of my kids classes was invited to participate in the AIDS March. The whole six grade class went. I was never asked for money and they were given no AIDS education. But they all had aware a special T-shirt so they can have their picture taken as a group. How in any way did this help stop AIDS? It was clearly just a photo op.

An entire industry has been created to sell stuff with slogans on it. So look at this. March is autoimmune disease awareness month. And if you go to the website http://www.giftsforawareness.com/ it's just a place to buy ribbons and T-shirts and mugs. They don't even pretend to be a charity. No money goes to research. No money goes to help sick people. Nothing, nada, zero, zilch.
GiftsForAwareness.Com was established by cancer survivors to raise awareness for cancer and other causes with their unique, powerful cancer slogans on t-shirts, apparel and gifts. Seehttp://www.giftsforawareness.com Cancer Survivors calling attention to cancer, health and other advocacy causes to support awareness. An array of ribbon t-shirts, apparel and gifts to promote the importance of cancer and health causes
So I am  put this question out there. Can someone tell me how Rare Disease Day or Autoimmune Disease Month could've helped me or can still can help me?

I will start....  The nurse in my doctor's office was aware of Guillain-Barré syndrome and told me to hurry up and get to the hospital. If she would've misdiagnosed me I might of been in a much bigger trouble.

Anyway, I never was one to wear a ribbon, but I do wear pins. Now I wear this one. You can buy it here.

From my youth I saved some of my pins. This one was my favorite.
I am still this guy






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