What does it mean to be an advocate? Does one have to yell louder, act like a nut, scowl more, make inflammatory comments or argue more passionately than others. I don’t think so, but sometimes you do want to yell loud. Sometimes you want to argue with people that make ignorant comments, but that only works in rare chances. I think an advocate has to be someone who speaks for those who can’t; one who can speak with passion, forcefulness and informed details. An advocate is one who also is personally affected by the event, circumstance or idea; something that will bring about positive change for many people. The dictionary defines and advocate as: a person who speaks or writes in support or defense of a person, cause:a person who pleads for or in behalf of another; intercessor.
I’m a perfectly healthy man, but I’m an advocate for those children stricken with Juvenile Diabetes. What does that curtail, what does that mean in the life of an average man, what does that do for the cause? I think it puts a real face, a real emotion, a real life story, a real perspective on the issue, the issue of children stricken with Juvenile Diabetes. I’m am advocate because I have 2 daughters with Juvenile Diabetes. Each diagnosed at age 3, one in 2009 and the other this year (2011).
I was on Twitter for about 6 months tweeting about Juvenile Diabetes (also called Type 1) when my second child was diagnosed. I was shocked, devastated, disillusioned, disheartened and broken. Something snapped in the days to follow, but instead of asking, why her, or how, or why me, I decided not to ask any of those questions, but ask how can I help other is need. How could I bring awareness to this disease, how could I help other parents with children that were stricken with other diseases or illness. One small gesture was to go to a walk for pediatric cancer, this was only weeks after my daughter was diagnosed. I could not do much, donate much, or raise much money. But I knew how important it was to my friends that people showed up, and sadly few did.
Another was to go with our local JDRF office and other advocates to meet our US Rep and plead our case for more funding. Asking for more help from the FDA and the faster approval of technologies and treatments that will help those with Type 1. My wife was able to tell the story of how our 3 year old was diagnosed a few days before. I could have went to work, money I did need, but I went, putting an extra face on the story. The representative needed to see a dad and his heartache, himself being a father of a 3 year old. I hope he went to bed that night a little worried about rogue antibodies and immune systems gone bad.
The next step was to start this blog in hopes it would be read by people not informed about Juvenile Diabetes. I hope it will get people thinking, understanding the difference between Type 1 and Type 2, and that diet is not always the cause behind Type 2. I hope in writing this blog a few families will find strength to make it through another night of battling lows, bad sites and cranky kids with high blood sugars.
I hope also that more people will start saying Juvenile Diabetes (Type 1) is an Autoimmune disease. I’ve seen a bunch of videos by celebrities who either have Type 1 or children that have it and I don’t remember the term being used. I’ve had people say to me that it confuses people when we say it’s an autoimmune disease. How else are we to educate people on how people get Type 1, how do we explain with one word, how do we dispel with one word all the misinformation the media is throwing out there. I don’t think people are dumb, and a statement like that does stop them in there tracks. One person told me “they had never heard that before”, I told them to check WebMD, or go on believing the lie! I will continually push for that in the diabetes online community, that they start forcefully saying its an autoimmune disease. I think this will help people understand if they donate to our cause (what ever organization you raise money for) that research may benefit other autoimmune diseases.
I will tell you again, I’m a perfectly healthy man, but I’m an advocate for children stricken with Juvenile Diabetes (also called Type 1), because they cannot speak for themselves. I will not be silent, I will not stop, I will be forceful, I will wear people down, I will bring attention to a disease that needs a cure now. I will not stop until one of 3 things happen, there is a cure, my daughter tell me to shut up because they will speak for themselves, or I die!
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Great to have you hear advocating, for yourself and your family and those other parents and all of us in the Diabetes Community. Our stories do bring a collective voice, and an important and needed one. Every one counts, so thanks for joining and sharing your stories here in the ever-expanding online community. can't wait to read some more!
I just spoke to my daughter's fifth grade class about diabetes and made it a point to use the term autoimmune disease and then tell them what it is. They seemed to under Lia's diabetes better because of it. Now, hope they share with their parents tonight at the dinner table.