T1DExchange – DiabetesDad

NEWSBREAK: Survey Data on T1D Misdiagnosed (Partial Data)…….Is Now In! Read and Share!

Posted on December 6, 2016 | by tomkarlya | 4 Comments

What I am about to share with you, has been shared with me from our friends from Glu, a T1D exchange Community and T1D Exchange. I’m sharing it because so many have been inquiring as to the data from their extensive survey entitled: Driving patient-centric research: DKA & Misdiagnosis.

Let’s be very clear about these findings…..THEY ARE VERY PRELIMINARY and these findings will be reported in much greater depth and with additional context in publications. This is in progress as we speak. After you read this, you will have a ton of questions, and that is fine—-but please know that nothing more can be released at his time until the information is released in publications; when it will be accompanied by more thorough findings.

The study came about because in 2015 there were a few well-publicized tragedies involving children passing away as a result of type 1 diabetes. In these cases, they were not diagnosed in time. Discussions with KOLs (Key Opinion Leaders) revealed that there is not any large-scale, patient centric data available on the diagnosis experience. Glu and T1D Exchange created a survey to collect this information.

The study was created based on seven tiers of interaction: Current events, Discussion with Key Opinion Leaders, Survey Design and Deployment, Analysis to pinpoint predictors (WHERE THEY ARE RIGHT NOW), disseminate findings, Raise Awareness, Affect change and prevent tragedy.

The survey was developed by Glu and the T1D Exchange Clinic Registry with an IRB approval. 2700+ participants’ response were tallied about their diagnosis experience.
Just some preliminary data from T1D Exchange revealed the following:
>35% of all participants reported that they were not diagnosed until more than one month after they noticed symptoms.
>41% of participants reported DKA at the time of their T1D diagnosis
>20% of participants report being admitted to the ICU at the time of their T1D diagnosis.
>24% of participants report being misdiagnosed with another condition at symptom onset.
>16% of pediatric patients were reported as being misdiagnosed compared to 39% of those diagnosed over the age of 18.
ANALYSIS TO BETTER UNDERSTAND THESE FINDINGS IS ONGOING

There will be much more data coming out on this but since so many have been asking, I wanted to you see just some of the data thus far. What is now evident, at this point, is that now there should be no doubt that when 1 in 6 children and 1 in about every 2.5 adults are being misdiagnosed…….this country has a problem with T1D diagnosis.

When this battle started, it was very difficult. We had nothing but a thought. A thought and the belief that there was a problem coming from the so many I had been in touch with over the years. With the outpouring of support from the diabetes community both during and after the news of Little Reegan and Kisses for Kycie interest grew; and grew quickly.

Now—-it’s a movement. In as much as we all could shout from the mountaintops (and did), and even share the horror stories, the constant response was, “Yes, this is horrible but is there data showing larger proof?” Now, we have indisputable data. When I read the data, to be honest…….I burst out crying. Now we know. To the so many doing so much, and way too many to mention here, thank you. To Anna Floreen, Danielle Gianferante, Dr. Henry Anhalt and all those at Glu and T1D Exchange, thank you for caring and creating this survey. We know how much more work you will be doing and we look forward to the comprehensive final findings.

To all those who lost an angel in this battle, and to whom a solemn pledge was made not to not stop until we have changed this paradigm——I share this data but know that it is just a weapon to help us in this ongoing battle. A big weapon. We will not stop.
Onward.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

*preliminary data collected from over 2,700 individuals who participated in a 2016 T1D Exchange survey about their diagnosis experience.

2016 Lisa Awards, A Family, Elected Officials, an Organization, and a D-Mom Blogger. YAY!

Posted on June 28, 2016 | by tomkarlya | 1 Comment

So hard to believe another year has gone by. Each year around June (her birthday), in honor of my friend Lisa Carlinsky, I bestow my Lisa Awards — kudos to people who understand the power of one person. To people who, in their own way, changing the world just like Lisa did.

My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer. Lisa and Mark (her husband, who is as close to me as any brother) shared their writings of her journey with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad. Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions. So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do. Her spirit, though, was never defeated. The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

So my 2016 Lisa Awards go to:

The Family of Little Reegan. As I thought about this, and after meeting their family; each and every one of them played a role in making sure Reegan’s Rule became law in North Carolina; the first of its kind. Much has been written and many others became involved. But when there was no one around, when there was no one fighting the battle, when there was no one to help…..there was the Family of Little Reagan. They received a promise that their little girl would change the world. With the movement to stop missing the diagnosis of diabetes picking up steam, that promise will be fulfilled. This one little girl, the power of one, in her short lifetime may very well impact the welfare of kids around the world more than those who have many more years to achieve it.

Representative Charles Graham and Senator Jane Smith of North Carolina. These two people could not be more different from their personalities to their political affiliations…..and yet….they reached across the aisle and worked tirelessly in the efforts to make Reegan’s Rule the law of the land. One has no idea just how hard it is go through the entire process in making an idea become law. The bipartisanship and the wisdom of these two elected officials are something the rest of the country should stand up and take notice. Each a power of one in their own right, came together to accomplish the impossible; on October 20th, 2015, Reegan’s Rule was signed into law by the Governor of North Carolina. Bravo to all who made a difference.

GLU/T1DExcgange is my third Lisa Award Recipient. This organization is presently undergoing an incredible outreach to capture the data that could help present a roadmap of change in the years to come on the missed diagnosis of T1D. Anna Floreen, Dr. Henry Anhalt and Executive Director Dana Ball (and Co-founder of T1DExchange) are the ones in the forefront but here has been so much work done from people we will never know to make their newest survey regarding missed diagnosis a reality, that truly the fair thing to do is pay tribute to the entire organization. Many components making up the power of one to change the world we live in, GLU/T1SExchange embodies Lisa spirit as few others ever could. This data will indeed change the world.

My fourth Lisa Award winner is D-Mom Blogger, author and super advocate, Leighann Calentine. Her Kids First, Diabetes Second has always been and continues to be a must read and her blog should be visited as often as possible. Her wit, style, and direct-from-the-hip delivery will enlighten you, inspire you, challenge you, and let you on a little secret—-parents can really have a life outside this diabetes journey. She is as humorous as she is poignant. When reading anything she writes, one always feels like a really good friend has sat down next to you in the biggest easy chair to talk with you. And like a true friend, she does not always tell you what you want to hear; she tells you what is real. Her long list of awards and accolades are only surpassed by her huge heart to make a difference in our world. She is a powerhouse, and all done as Leighann would do it…..with integrity and honesty.

So these are the Lisa Award winners this year. And as always when I write this annul column, it brings me back to a woman who I cherished. He son is growing-up to be a fine young man and in a wonderful way. Mark (my adopted brother), her husband, has found love again; as Lisa would want it. And life is moving on. But Lisa will always and in all ways be present. And in as much as I love doing this article every year, I still miss our friend, Lisa. She was some power-of-one.

Congratulations to this year’s recipients.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

If We Have EVER asked You to Do and Share Something……THIS IS IT.

Posted on June 25, 2016 | by tomkarlya | Leave a Comment

There certainly is no secret how strongly I feel about the missed diagnosis of type 1 diabetes (T1D). Many long hours after work and at lunchtime I spend spreading the word so we can stop the seriousness of kids seeing a medical professional with flu/virus like symptoms and no testing being done resulting, many times, in disaster.

I even created a ‘town hall’ survey to collect what I call ‘unscientific numbers’ on what was happening in this world……but important numbers none-the-less. I was thrilled to announce recently that the folks at GLU/T1DExchange were creating a survey with an IRB (Institutional review board) approval to obtain REAL SCIENTIFIC DATA to show the world.

THAT SURVEY IS NOW READY.
Before I share that link, you need to know that you must become a member of GLU to take the survey and you will not be allowed to take it unless you do. You can ‘opt’ out of any contact from them if you like, but they will be updating us on the results of the survey so you may want to consider hearing from them, and I leave that to you. There has to be a control group according to the IRB regulations so you must join.

PLEASE KNOW HOW CRUCIAL IT IS FOR US ALL TO BE INVOLVED IN THIS STUDY/SURVEY ESPECIALLY IF YOU HAVE BEEN VICTIM TO THE MISSED DIAGNOSIS OF T1D. IF WE DO NOT HAVE OFFICIAL DATA THAT WE CAN POINT TO, NO ONE WILL HEAR US.

Speaking as a parent to a parent, or an advocate to a person with diabetes; PLEASE take the time it takes to do this survey and PLEASE SHARE THIS WHERE EVER YOU CAN. You all remember the faces of the kids I have posted today. They SHOULD HAVE NEVER died. You all read about them during and after each of the tragedies happened—-they died because their diagnosis was missed. You have a story also. Some of your kids also got very sick as well…..we MUST be able to show and tell those stories.

On THIS we can make a difference. On this we MUST make a difference. Please take the survey and share this story anywhere you can so we can capture the most amount of people possible. I’m so humbled and grateful to GLU/T1DExchange for hearing the Child’s Cry for Change from voices that can no longer speak for themselves.

Help us save lives and click here.

Thank you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Incredible News in the Battle Against Missed Diagnosis of T1D

Posted on June 15, 2016 | by tomkarlya | 4 Comments

A year. A full year since I met Anna at T1DExchange and shared with her the vision to try to end, halt, or even slow down the missed diagnosis of T1D. I needed help. She listened, she asked a million questions.

I shared my town hall meeting survey with my questions. “It’s not official, they were just from me as a dad….it has to be better. The numbers have to be real, they need an IRB. Mine was just to prove a point.” We need questions that can paint this picture accurately and with the seal of approval of an IRB.

Anna asked a million more questions and assured me that we had her attention. I just heard from her today and I can share with you now that the T1DExchange/GLU have developed a series of questions, submitted for an Institutional Review Board approval……and today I was informed of THAT approval which has now been confirmed and granted.

What is an IRB….from Wikipedia: An institutional review board (IRB), also known as an independent ethics committee (IEC), ethical review board (ERB), or research ethics board (REB), is a type of committee used in research in the United States that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans. They often conduct some form of risk-benefit analysis in an attempt to determine whether or not research should be done.

This means that with T1DExchange/GLU behind the survey with IRB approval, we may have an incredible set of national (and even international) numbers (thousands in fact)that the world can point to and say, “Look, THERE IS A PROBLEM.” The survey will be released shortly to capture incredible numbers.

This took a GREAT DEAL of work and I’m humbled and thankful by both the efforts of Anna and Dr. Henry and everyone at T1DExchange in taking a concept (read the town hall survey results here) and also turning it into what can become one of the most comprehensive surveys to capture real numbers on the missed diagnosis of t1d ever assembled…….we can hope for that, and I will.

Onward…..we will make a difference.

And as excited as I am about this, every face that I have seen in this battle who we have lost come before me; and they remind me how we started, why we started, and why we ALL must make sure that this is stopped.

Stay tuned, as we will need much help spreading the word for the survey to be filled out; once released.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.