The UCLA Study is all about children with type 1 having a tough time making the transition from their peds endos to an adult endo.
They followed children for years and noticed this SHOCKER: Young adults with diabetes have a really rough time transitioning from their peds endo to an adult endocrinologist.
YA THINK?
When I posted the link on Facebook other former children with diabetes chimed in and agreed that this information was:
A. Nothing new
B. Infuriating and comical at the same time
C. Bullshit
Had those conducting the study taken a little time to listen former children with diabetes who are now adults living with diabetes wax poetic about problems transitioning to adult Endos? Because they would have realized that this is NOT a new problem - It's almost a damn near standard problem across the diabetes board that needs to be fixed - Immediately!
Transitioning from a child to an adult is a bitch without a chronic illness, but add diabetes to the mix and it’s whole other shit storm to deal with.
I didn’t want to jump the gun, so I put a call out on Facebook about former cwds switching to adult endos and the response was GREAT (So much so that THIS awesome blog post from Melissa at SweetlyVoiced came out of it,) and my post with DOC responses will be up soon.
Also, I picked up the phone on Tuesday and called UCLA & I emailed Dr. Lotstein (the Dr. doing the study) a detailed email that afternoon and asked her the following questions:
1. Transitioning from Peds to adult Endo's has been a huge issue for patients with diabetes for decades, when did Dr. Lotstein first notice the issue?
2. Has Dr. Lotstein talked with former children with diabetes who are well into adulthood and living with diabetes regarding transitioning?
3. Will the second phase of the study be as long the first, what types of support systems will be studied & is the Diabetes On-line Community being considered as part of the support system?
4. How many phases are in the study?
5. How much money is being/will be spent on the study?
6. How do you plan to incorporate what you've learned in the study into a real life and when??
For the record, I have yet to receive an answer from her.
And for the life of me I don't understand why YEARS are being spent studying this phenomenon when there are literally thousands and thousands of adult examples of this very thing.
Why not take the money that’s being spent on a multi-phased study and develop real time solutions in the form of patient support groups, family psychologists and HCP liaisons to help with the young adults who are no longer children with diabetes, but who are young adults who need to transition to an adult Endo.
The waste of the study participants valuable mental and physical health is all I can think about!
Why am I so passionate about this? Because I know what happened to me.
I went to Children’s Hospital in Philadelphia (CHOP) every three months like clockwork from the time I was diagnosed at age 8, until I was almost 20 - When they finally kicked me out.
I remember crying and begging them to let me stay.
Diabetes was hard, and my Peds Endo & company were like family - They were all I’d known in my life with diabetes.
And even when I wasn’t the perfect child with diabetes - they still loved me - And they cared enough to let me know when I needed to do better.
And at the time of my switch I wasn’t doing great with my diabetes.
I think my a1c was somewhere around 13 - MAYBE.
It was the Diabetes Dark Ages, my family shared one meter that took 2 minutes and at least half a liter of blood at each sitting.
There were only two kinds of insulin on the market and the rules of diabetes were entirely different.
And I was struggling with so much change in my life, not to mention I was suffering from a major case of Diabetes Burnout.
I’d lived with diabetes for almost twelve years at that point - I just wanted to be a normal college kid.
It was the Diabetes Dark Ages, my family shared one meter that took 2 minutes and at least half a liter of blood at each sitting.
There were only two kinds of insulin on the market and the rules of diabetes were entirely different.
And I was struggling with so much change in my life, not to mention I was suffering from a major case of Diabetes Burnout.
I’d lived with diabetes for almost twelve years at that point - I just wanted to be a normal college kid.
Turns out my new adult Endo was at the University of Pennsylvania, and he was a big name in the diabetes world. He’d written books, done lectures, and he considered himself a diabetes god.
Dr. Big Name wouldn’t let my parents come in to the appointment with me - I was an adult and parents were not allowed.
And I thought that maybe I could handle it - but I was scared.
When the big day came my father dropped me off and told me he’d pick me up in few hours at the campus bookstore.
And I remember sitting at Dr. Big Name’s big desk while he looked at my labs for what seemed like forever.
And I remember starting to cry when Dr. Big Name told me I wasn’t a good diabetic.
With numbers like these you’ll follow in your sister’s footsteps - DO YOU WANT THAT? he said sternly.
Me: NO. I’m trying.
Dr. Big Name: Well you’re not trying hard enough - You’re not disciplined enough.
You know what diabetes can do, you do know that it’s s killing your sister, don’t you?
Do you want it to kill you, too?
Do want to do that to your parents? Do you want them to suffer even more?
And at that point I don’t remember what I said, but I knew I was never coming back to his office, no matter how many books on diabetes he wrote.
I left that office with tears streaming down my face and I remember feeling so incredibly alone, afraid and defeated.
I felt like I would never own my diabetes so why even try?
I felt like I would never own my diabetes so why even try?
If diabetes was going to kill Debbie, then there was a good chance it would kill me too.
It took me a good hour to pull myself together and calm down.
When my dad picked me up an hour and fifteen minutes later, I told him that I was NEVER going back there.
And I never told my father what Dr. BigName said about my sister or me dying - I knew it would hurt him and I knew he’d get angry and I didn’t want to be the cause of any more diabetes pain for my parents.
So I just told my dad that Dr. Big Name was an asshole.
But I thought about What ‘Dr. Big Name the Asshole” said to me for years and years and and well into my adulthood.
And up until I finished college and moved away, I went to my father’s Endo in my small hometown.
She was a good Endo & tough, and her waiting room was always filled.
She didn’t make me cry, but I knew I was challenging patient. I was young, most of her patients were not.
and I didn’t want to be there.
I was angry about a lot of things back then, including my diabetes.
I was angry that my sister was dying from a disease we both shared, angry and afraid that history might repeat itself, angry about everything.
It was tough to be an adult, especially a college aged adult with diabetes who tried her best to be “normal.”
When my sister died, I remember going in for my D checkup and everyone in the office looked at me with pity - And I wanted to be anywhere but there.
I still had more than my share of shitty numbers in college, but at least I was going to see an Endo.
And when I finally moved to Philadelphia after I graduation, I found a great Endo - An Endo who talked with me, not at me.
And when I finally moved to Philadelphia after I graduation, I found a great Endo - An Endo who talked with me, not at me.
And that Endo introduced to the amazing Dr. J - And because of both of those amazing Endocrinologists my world changed for the better.
But in my heart I know that there was damage done, both mentally and physically in those years of struggle.
Seriously, how could there not?
And I wish I’d known that there was a huge number of us who grew up with diabetes that had a really tough time becoming an adult with diabetes - both in the adult Endo’s office & out of it.
I wish I'd known that it wasn’t all my fault that the transition had been so incredibly difficult.
I wish I'd know that I wasn't bad or terrible - I was just a 19 year old who was trying to be a grown up and figure it all out.... A 19 year old who was trying to find her place in the world.
I wish I'd know that I wasn't bad or terrible - I was just a 19 year old who was trying to be a grown up and figure it all out.... A 19 year old who was trying to find her place in the world.
And that’s why I wanted to throw my laptop against the wall when I read about the UCLA study.
Why waste money to prove what we already know to be?
Instead of spending the money on the next phase of the study, which (and I'm quoting here,) "is to directly follow young adults transitioning to adult care to see what happens as they age and to examine how different types of support aimed at easing the transition affect health outcomes."
Why not spend the money on hiring people to help with transition from pediatric endocrinology to adult endocrinologists?
Why not spend the money on hiring people to help with transition from pediatric endocrinology to adult endocrinologists?
Why not create markers that can be put in place in real time and across the country to help people?
Why not be the change that we all want instead of spending money to eventually put the changes in place - But lose another diabetes generation in the process?
You don’t have to be a Rocket Scientist to see the problem, you don’t even have to be an Endo - But you do have to listen and fix the problem- ASAP, because peoples lives and future good health depend on it.
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