type 1 diabetes – DiabetesDad

NEWS BREAK: Forbes-“No Such Thing as Type 2 Diabetes…” Seeking DOC Input.

Posted on May 31, 2013 | by tomkarlya | Leave a Comment

There has been much, much discussion about the T1/T2 diabetes name confusion/change/clarification and what to do about it. Below I have a link to a story that appears in Forbes Magazine by Alice Walton, a contributor that covers health, medicine, psychology and neuroscience.

Ms. Walton states in her article that we should be rid of the Type 2 diabetes name forever and continues in justifying why; but by time the reader is finished reading, one realizes that she is actually advocating for a name change. But you read for yourself and feel free to share your comment.

Here is the link:
http://www.forbes.com/sites/alicegwalton/2013/05/30/no-such-thing-as-type-2-diabetes-why-old-notions-of-disease-need-revamping/

When we leave the world of our Diabetes Online Community with our ideas and thoughts; and we start making it to mainstream media; it translates to the simple fact, people are beginning to listen.

It might even make sense for us, who write, to send the Forbes article to top-tier folks at the NIH, ADA, WHO, CDC and say; “I am writing an article as a follow-up to this recent publication, care to comment?”

Someone captures a quote from one of these top Docs as an acknowledgment of being correct—-it could get picked up around the world. If no one else wants to do it, let me know; and I’ll do it.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Needs a New Name Change????……..Ummm…….More than That!!!!

Posted on May 28, 2013 | by tomkarlya | 17 Comments

Let me start off by saying this is NOT AN ARTICLE on what to do with the name of diabetes. I was just looking at some of those posts and I happen to cut away and started reading an article about one of the rookies trying out for the Baltimore Ravens Football team who has T1 diabetes.

In the article the writer calls type 1 a rare disease. It hit me as weird. Rare? I guess being involved in the diabetes world for as long, and as much, as we have been, I just never used the word ‘rare’ to describe what my kids have.

Quick answer: How many people have T1 diabetes in the United States? Do you know? Me either so I started trying to find out. And it is THIS point that leads to my headline.

Now there were a whole lot of people who had something to say about what the name of T1 diabetes should be, should not be, and/or what to do about it and that reading showed a fabulous passion on all sides of the fence. Those who know me know that I love passion. It stimulates discussion and education when directed correctly. That fabulous line from Field of Dreams when James Earl Jones’ character says; “I wish I had your passion Ray, ………..misdirected though it may be………it is still a passion”, is one of my favorite lines.

And perhaps we should ‘tap into’ that passion to help fix a really big problem.

It seems to me that there are many things wrong with the perception, reporting, and simple facts about T1 Diabetes. More than just the question; “Should one be called a person with diabetes or a diabetic?” From my homework, the best ‘educated’ (notice the quotes) guess is that there are between 1-1.5 million people with diabetes, with some places saying 2 million.

The American Cancer Society states that around 232,340 women will be diagnosed with breast cancer in 2013. Seriously 232,340 people and there are anywhere from 1-2 million people with T1 Diabetes? Seems to me there is a SERIOUS reporting problem that one disease estimate could be that defined; and we do not even know how many people actually have T1….don’t you agree?

Thankfully the T1D Exchange is working real hard to capture numbers to share information but so far, only 26,000 are part of that registry. “Only” is a relative term because THAT IN ITSELF was a monumental job to capture I’m sure.

Try to find an exact number; even to ALL of diabetes, seriously—look at those numbers; the American Diabetes Association states that 7.0 million people do not know they have it (which I imagine is T2); seems more people do not know they have it than we know more exactly how many have type 1……..am I the only one who finds this a bit disconcerting? (AND TO BE VERY CLEAR: I am in NO WAY stating that the ADA or any other organization is at fault for the statistics they show on their website. This is problem is so much more than stating facts as they are made known; this is a much bigger problem on collecting proper data for others to distribute.—-I just wanted to be clear about this point.)

If those who keep national statistics do not find it important enough to obtain more exactly those afflicted with T1 Diabetes; if reports do not know more exactly who has suffered and even died from T1 Diabetes; if T1 diabetes and complications statistics are kept so loosely that no matter how hard you ‘google’ or ‘yahoo search’ you cannot find answers: how can we blame media and others for ‘getting it so wrong’?

Let me ask another question: In your heart do you think that there are more than 1-1.5 million people with T1 Diabetes in this country?

I’m not sure either……..seems though someone should be more diligent in finding out…….yes?

I am a diabetes dad

Please visit my Diabetes Dad FB Page and hit ‘like’.

A Response from a Good Friend of a Broken Hearted Family—Will You Share and/or help this Story?

Posted on December 1, 2012 | by tomkarlya | Leave a Comment

I have posted a reply to my post about Brian Doss from Tracy Brokmeier, who created the fund-raising page for his family. Before you read it I would like to share with you that I have concluded that this is about numbers. Hundreds of people read the blog, and the good news is that we have almost doubled the money that they had collected thus far.

What could be a little bit better is the number of people who chose to give but when it comes to giving I have learned over the years that what people chose to do or not do is a very personal decision and I have always said, “Celebrate those who say yes, and those who say no are entitled to not give.” I do respect that point and I leave this decision up to you.

What I would ask; is that you pass this on and ask others to pass it on….THAT WE CAN ALL DO. The more who read this story, the more who might help.

Thank you to all that help and read this incredible story from Tracy, I hope it moves your heart to give just $10 (of course more would help more if you can) or at the very least, pass this on to others.

From Tracy:
I just wanted to take a moment to thank you for posting about Brian and his family. Brian was my best friend, and while we live far away, it didn’t matter, our families grew very close over the years, brought together by a common disease, Type 1. There was not a day that went by that I didn’t talk to Brian (Big Doss as I called him), and I miss him so much. Brian was like a big brother to me, an uncle to my kids, and is so hard to believe that he is not here anymore. I started the fundraiser for his wife, Mary Ellen, and their kids, Megan and Zachary. They really need as much help as they can get. Brian’s income was the only income and he held the insurance. Imagine losing your husband, your world, and just 30 days later losing your health insurance that pays for you and your children’s medical needs. Brian was a very simple man and always worked hard for what he had. I know he would never even consider asking for help for himself but was always willing to help out someone else in need. He was the type of person that would give his shirt off his back for you, even if it were his only shirt. So I am asking, for him, because he can’t. Please help in any way you can. And if you are not in a position to make a donation, please at least pass his story and the information on the fundraiser on. I thank you again from the bottom of my heavy heart. ###end

Here is the site where you can donate:
http://www.giveforward.com/dossfamilyfundraiser

Tracy thanks me, me writing about this incredible man is the easy part—-the thank you goes to you who gave, will give, and/or share this story.

Make a difference…….give…….bless you.

I am a diabetesdad

PS..here is the link to the original story:
https://diabetesdad.org/2012/11/30/death-too-soon-we-can-all-help-even-a-little/

Are There TOO MANY Diabetes Days?

Posted on October 27, 2012 | by tomkarlya | 5 Comments

I’m all for education and I have to admit that one would think that the more days having to do with diabetes, the more education there is about the disease…..right? Well maybe not.

Diabetes Awareness Day, Diabetes Awareness Month, T1 Diabetes Awareness Day, Diabetes Blogger Day, Diabetes Alert Day, Diabetes Advocacy Day and actually the list goes on and on. I was speaking to a reporter friend of mine and she told me that she gets more press releases about the different ‘diabetes days’ than any other disease state.

I asked her if that was bad? And she said that it is a difficult position to be in as it means she has to choose which ‘diabetes day’ is not only important but which one would be important to her readers. She said it is really way too much.

As I spoke to some of the many people I know who are involved in the diabetes community a common thread-of-an-answer came back to me. Many people in the diabetes community have a cause or aspect that they feel is important and they think it just as important to let people know about that aspect.

But is that okay to be so diabetes-specific rather than seeking the bigger solution of educating the population as a whole with one centralized messaging?

As I stated, one would think that the more opportunity to get the word out there the better but my reporter friend had this to say about that (paraphrased): Ever hear the old story about a kid talking to his mother about mother’s day and the child asks “when is kid’s day?” to which the mother responds ‘every day is kids day’? Everyday at a newspaper cannot be given to diabetes awareness, or at least the amount of days we are asked to publish something, and with so many choices about diabetes–there can be, and is, no unity in the messaging that diabetes advocates crave.

Wow. This was an eye opener for me. So I present it to you the diabetes community…..what do you think?

I’m a diabetesdad.

The Worst Kind of Diabetes is………

Posted on October 4, 2012 | by tomkarlya | 14 Comments

You Have a Job to do.

Diabetes Awareness month is November.

We’re not going to wait. Too many are getting it wrong now, today. Do something today that could have an impact on Diabetes Awareness Month for 2012. Ready?

The worst form of diabetes…….is getting it wrong. Find a newspaper in your area and either email or send a letter. Here is the copy of my actual letter that I sent to Mr. Fred Groser, Publisher of Newsday, here on Long Island; and I also sent to the Vice President of Editorial Services for Cablevsion—it took me 7 minutes and 37 seconds to do both. If needed, take mine and tweak/edit as needed……but do it.

Dear Mr. Groser,

My name is Tom Karlya and I am an online writer about diabetes (www.diabetesdad.org and www.dlife.com/diabetsdad), active in many diabetes causes, and probably most importantly; I am a father to two children who live with Type 1 Diabetes everyday.

As I’m sure you know, November is Diabetes Awareness month and I, along with thousands of people across the nation who are touched by this insidious disease, are writing to our local media to ask that should you run any stories about diabetes; PLEASE make sure you ‘get it’ right.

When referring to Type 2 Diabetes designate it as such; and the same with Type 1 Diabetes, or Gestational Diabetes, or to whichever form of diabetes you are referring. There is so much misunderstanding and confusion about diabetes, help us educate the public to understand fully by being specific where needed.

Thank you for your time. You can contact me directly or feel free to reach out to the Diabetes Advocates at info@diabetesadvocates.org; their website is www.diabetesadvocates.org; they will be glad to answer any questions you have about the different forms of diabetes. Thank you for your support during diabetes awareness month.

Regards,

–Tom

Imagine if just 1000 people did this to two forms of media across the country this week getting ready for Diabetes Awareness month. You can even cut and paste what I have given and tweak it.

November is Diabetes Awareness Month and today …is…..is…..um……’help the media get it right in November’ day……..so let’s go.

If we don’t try to correct the problem, we cannot complain when they get it wrong. Should you do it, send me a response to let me know the name of the newspaper and in what city and state. This is an easy one, but one that can surely have an impact….let’s do it together. ‘Don’t do nothing’…….and do it today.

I’m a diabetesdad.

Do You Dance?

Posted on September 17, 2012 | by tomkarlya | 2 Comments

Every summer thousands of young ladies attempt to be part of the Rockettes Super Intensive (RSI) program. “Super”–beyond the norm. More intense than intense.

Those who are accepted are challenged to push beyond their limits of dance endurance. Dare I say even ‘breathing endurance’. And when they are finished…..they are challenged to push themselves even harder. They push and push and maybe, perhaps, they might even be asked to audition for the actual Rockette line.

Their sweat pushes off their bodies and the unrelenting instructor pushes the timing, the quickness, and of course that world-famous precision.

Discipline and strength beyond human endurance just to get a feel what it is like to be ‘that’ precise; ‘that’ good, and full of ‘that’ much confidence…..all in one week to feel a little like a Rockette. Thousands want it, few get the opportunity.

Would we ever take our (or our children’s) diabetes ‘that’ seriously? Rockettes Super Intensive seriously?

And in this RSI session is a young lady named Lauren. She wants to be a Rockette so badly she can taste the idea of becoming one. And yet, she is part of RSI and she IS DOING it with type 1 diabetes. How serious do you think she must be with her diabetes?

Today I’m humbled. Her story is an incredible one, she is a young lady but she is a child too. People with diabetes are incredible; they do everything with the intensity of a Rockette; they have to–the kickline of their lives depend on it.

I’m a Diabetesdad.