Skip to main content

We Are Type 1: A new organization to support

For all of us with chronic illnesses, we can appreciate non-profits who are dedicated to helping those who are sick and struggling, and a new wonderful organization just popped up, called "We Are Type 1". I saw it mentioned on a good friend's social media page, and was surprised to hear from her that there are no organizations purely dedicated to Type 1 diabetes and most of the research/funding goes into Type 2 Diabetes. With about 26 million Americans with diabetes, there needs to be more support for this growing chronic illness! I was surprised to find out that only 5% of people with diabetes have Type 1, which used to be called Juvenile Diabetes. It is often diagnosed in children and adolescents, but people can live with it forever. 

This new organization hopes to build its membership and connect those with Type 1 Diabetes, and also educate and advocate for them. To meet people on the site, you need to make a profile and then you will be able to pick your age range. Categories include "12 and under", "teens", "20s", all the way up to 100+. Currently, these are listed at the organization's national legislative priorities​ if you want to support them and contact your legislators:

  • Medicare and Medicaid Type 1 Diabetic Product Coverage
  • Private Insurance Access and Coverage of Type 1 Diabetes Supplies
  • Healthcare Reform and Implementation
  • Healthcare Exchanges and Essential Health Benefits
  • Food and Drug Administration’s Biologics Regulations 
  • Comparative Effectiveness Reform​
  • Independent Payment Advisory Board Implementation 
If you need more general information about diabetes, check out the "Recently Diagnosed" page on the American Diabetes Association website. Education is key, and support is crucial. And remember, you can always lean on one of the Jonas brothers for support. (Click for a surprise!) Don't forget to reach out and utilize mental health providers like us if you need some extra tools!

Popular posts from this blog

The Long Shot

I don't even know where to begin as my head is still spinning with the news I received today.  So I'm just going to put it out into the ether:

Entyvio (vedolizumab), which I started for my Crohn's disease about 6 months ago, did what no other approach has:  cleared my eosinophilic esophagitis. 

But wait, isn't Entyvio a drug for inflammatory bowel disease?  Yes.

Is Eosinophilic Esophagitis a type of inflammatory bowel disease?  Nope.

Are IBD and EoE related at all?  As far as we know today, no.  There are very few overlapping cases.

So WTF happened?

Without getting into the biomechanics of a drug that's way over my pay grade in medical understanding, my gastroenterologist had a theory that the way Entyvio works would block the cascade of eosinophils (a part of your immune system, a type of white blood cell) through it's magical way of selectively keeping my immune system from attacking my digestive tract.

She was fucking right.

Since being diagnosed with EoE in ear…


I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

In my bubble is the world of academic medicine, academic health psychology, and a circle of psychologists dedicated to people living with chronic digestive illness.  I live in Chicago, a major me…

Everyone Can Fall Down the Rabbit Hole

A few months ago my 3 year old son uttered the words, "I hate you, mommy."  It was after I yelled at him for doing something wrong, which I've long forgotten what exactly the source of our exchange was. But I certainly can remember those words. I can hear them in my head if my brain decides, at random moments, to replay them.

My intellectual, clinical psychologist brain can explain this for days. He's 3, he doesn't know what he's saying, he learned the word hate somewhere else, presumably at preschool, as I discourage its free use in our house. He's using it to express his anger not his true feelings toward me because once he self-regulates (psychobabble for calms the F down) he tells me he loves me.  Blah blah blah.

Regardless of all that knowledge and shit I have from too much education, those words destroy me emotionally.  Maybe they hit me harder because of my profession because my head goes to all the subsequent pathology he'll surely go on to de…