What am I Doing Here?……..for Kycie, for Reegan……the Fight Goes On!

Kyce ReeganThis is the question I asked myself as I looked at the many attendees at the American Association of Diabetes Educators (AADE) Annual Meeting who stopped in to the presentation of the incredibly knowledgeable Susan Weiner and myself at our missed diagnosis of T1D.  People believe that speaking in front of a large crowd is easy for me, in reality it is not, for reason that those who are close to me understand.  It is even more daunting when the audience is full of professionals.  REALLY SHARP PROFESSIONALS.

The week before I was to speak I reached out to two parents who lost their child to this disease being misdiagnosed and to fill them in on what was happening. It is always a stark reminder to me that this work should not, and will not, stop for me until the paradigm is changed to a direction where each and every person showing stomach virus like symptoms (and more) are checked for elevated blood sugars.

What makes it easier for me to present is when I reflect on each and every person I have met in this battle who has a child who and is no longer here because a simple blood check was not done.  I also reflect on the many people who have joined this fight, and have been in this fight, long before we have arrived where we are today…….but make no mistake; the surface is barely scratched.

Presenting at AADE allowed a very unique opportunity.  Hopefully, and eventually, every state will hear the message and carry the banner.  The list keeps getting longer of those who help and when it comes to AADE, Susan has been my mentor and guide through the maze of people more educated than I could ever become and true community leaders.  My thanks to her are endless.

I also know I have a story to tell……..and as long as I have a breath in me, the story will continue to be told………it’s owed that much energy, and more, to Kycie, Reegan, and the so many more who can no longer fight for themselves.  Are you still in the fight? Because we surely need everyone willing to spread the word.  Let’s not wait for the next Kycie or Reegan to happen to say, ‘this is horrible’.  Let’s get rid of ‘horrible’.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

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

Lisa and MarkSo 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:

reegan sun glasses  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 Graham Senator Smith  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 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.

dmom 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.

Kids Missed dxThere 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

Kids Missed dxA 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’.

NEWSBREAK: Missed Dx of T1D Claims Another Young Life….We Must Care Harder!!

Angela newSigh.  Yes my dear friends, it has happened again.  And it will keep happening until it sinks in that the missed diagnosis of type one diabetes is so real….and it kills.  It injures. It is unnecessary.  Even in the story below, the Doctor interviewed does not even mention the flu-like symptoms as a warning sign that just took this young lady’s life.  I placed in bold the fact that Angela’s mom had taken her in to see what was wrong and yet, again, a child was sent home.

I hope you are as tired reading about these stories as I am about writing about them but I share this, I swear with everything inside me that I will not stop until we change this paradigm.  I now add Angela to my pledge of not stopping until the world hears A Child’s Cry for Change.  R.I.P. sweet angel, your silenced voice will be heard again; of that you can be sure.

This story is copied from the WKRN Nashville ABC affiliate on News 2, the link follows the story.
MURFREESBORO, Tenn. (WKRN) – A Murfreesboro mother took vacation to spend spring break with her five children, but now she’s planning a funeral for one of them after a common but treatable childhood illness.

Angela Elizabeth Robinson, 11, was diagnosed with Type 1 diabetes too late, and she died suddenly over the weekend.

Mother Darla Robinson flipped through a tiny book of memories of her daughter Angela Elizabeth, reflecting on her life. “She was a sweet girl, enjoyed being playful and listening to music,” Robinson said.  She said there is comfort knowing Angela lived her 11 years of life to the fullest.  “That’s the type of person who was, very kind, enjoyed life,” Robinson said.

For the most part, Angela hadn’t had any major illnesses until now.  She was a normal healthy 11-year-old up until Monday of this past week,” Robinson said.

That’s when Angela became sick and began having muscle spasms.  Her mom took her to the doctor Tuesday of last week where she was prescribed some medicine and told her to drink plenty of fluids.

She had gotten worse by Wednesday.

“I went to go check on her and she didn’t respond to me so we had to get her to the hospital as quick as possible,” she said. “She was diagnosed with on-set juvenile diabetes and she went into diabetic ketoacidosis and was unable to recover.”  Her blood sugar was 1,600 and doctors couldn’t get it down. “She died at Vanderbilt hospital at 2:57 Saturday morning,” Robinson said as she teared up.

Type 1, or juvenile diabetes, is more common than you may think, and can develop quickly, according to doctors.  More than 200,000 cases were diagnosed each year in the United States.

Dr. Adam Childs with TriStar Family Medicine, located on Medical Center Parkway Murfreesboro, said parents know their children better than anyone so pay attention to the warning signs.

“What we watch out for is excess thirst, frequency urination, having a child that’s very hungry often, but despite all that, that child may be losing a lot of weight,” Childs said.

Childs said other things to watch out for if a child is fatigue, or moody.

There is no cure for diabetes, but it’s easily treatable.

“It’s important to get it treated because if you don’t treat it, it can have some very severe and devastating consequences,” the doctor said.

The Oakland Middle School student had hoped to one day to become a doctor to help other.

“Even though she won’t fulfill her dream of being a doctor, she did fulfill at least that part of the dream, to help some other child out there who may have been in need,” Robinson said. “One of her organs, her pancreas was donated to a doctor who is doing research in the area to hopefully find a way to fix the problem.”  Robinson said she wasn’t prepared to bury one of her children and she doesn’t have life insurance. The Oakland community has come together and started a GoFundMe account to help the family with funeral expenses.  Click here to donate.
(—-END OF STORY AS IT WAS PRINTED)

So what gets you to take a step, a baby step, in helping to stop this from happening.  If we do not cry out as a unified community……I assure you no one else will in the same way we would, could, should.  I assure you of that point!  Don’t do nothing….care harder.

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

This is the link for the entire story as it appeared on the WKRN website; http://wkrn.com/2016/03/30/mom-plans-funeral-for-daughter-days-after-being-diagnosed-with-diabetes/