Encapsulation Gives Me Reason to Hope
When I hear the word ‘cure’ it sends my mind racing with visions of science fiction television. I imagine my daughter being scanned by Doctor McCoy, in an instant his tricorder beeps and Arden’s pancreas springs back into action. Everyone in the room takes a pause for dramatic effect and type 1 diabetes is no more.
It’s that level of high yet unreasonable expectation, mixed with a healthy amount of cynicism that keeps me from becoming too excited when news of “promising research” is announced. I read the articles - well, I thoroughly peruse them - but most research news leaves me feeling like real-world science hasn’t quite caught up to the desires of the scientific community. Curing a disease without significant effort, crazy drugs and more than a bit of luck seems unlikely to me right now. In other words, I’m a tough sell.
Until I heard about Beta Cell Encapsulation…
Encapsulation grabbed my attention in such a big way that I asked it’s benefactor, JDRF (formally known as Juvenile Diabetes Research Foundation) if there was someone that I could interview about the technology. They were kind enough to put me in touch with JDRF Director of Discovery Research, Albert Hwa, PhD.
My conversation with Albert did a few things. It reminded me that I am not a scientist, gave me great hope for type 1 diabetes treatments and made me want to tell you about what I learned without being too sciencey - because I don’t want you to just peruse this article.
What is Encapsulation: In layman's terms, the process of encapsulation has made it possible for foreign cells to be introduced into the body after being coated (encapsulated) with a substance that protects them from your immune system. Specifically for the ViaCyte product design, the cells are inserted into a device that is currently the size of a business card and surgically placed under the skin during an outpatient procedure. The device allows its cellular passengers to interact with the body, measure the level of glucose and produce insulin without being identified by the immune system as a foreign body - all without anti-rejection drugs. Through the nature of science, encapsulation keeps your immune system from attacking the new insulin producing cells without blocking other needed functions. That’s science!
Is this a cure: Encapsulation is not a cure but it is the first stopgap between a cure and the reality that people living with type 1 diabetes experience that makes me say, “Where do I get this for my daughter?” It’s not a cure because the root issue is not being addressed, as the pancreas remains devoid of insulin-producing cells, and the autoimmune responses against them persists. The goal of this research is to introduce donor beta cells that will eliminate the need for manmade insulin. That would mean no more shots, finger sticks, insulin pumps, glucose monitors and the wildly fluctuating blood glucose levels that cause serious long-term health issues.
How long will the device last: Researchers aren’t positive at this time how long the cells will produce insulin before they need to be replaced, but a minimum of two years seems to be the initial hope and goal. Having a small procedure every two years is a vast improvement over what my daughter and the millions of other people who have type I diabetes deal with every moment of their lives.
More details you want to know: There are currently two companies conducting trials on encapsulation, both are being partially supported by the JDRF. The trial that was being held as I spoke with Albert Hwa was happening in a human being. Human trials are very exciting because so many ideas never get past animal trials; Most of the research that people with type 1 diabetes hear about cures mice but never makes the leap to helping people. The encapsulation human trials are in their infancy; Albert told me that even if everything went exactly perfect with the trials, it would still be “ten years” before Encapsulation could become a reality.
I chose to learn more about encapsulation because I’ve watched my daughter live for nearly a decade with type1 diabetes and this is the first time that I’ve felt like I was looking at a potential answer that could make it to market. I’m not a health care professional, just a father hoping for his daughter’s life to get better. In my estimation, encapsulation feels possible. I can imagine driving my daughter to her doctor to have a form of this device implanted, not unlike a pacemaker. For a guy that doesn’t usually feel very hopeful about stuff like this - I feel hopeful.
You can read more about encapsulation on the JDRF website, they even have the sciencey stuff:
Best of Betes Blogs From 2014
Best of Betes is from Sara Nicastro and it is wonderful!
from Best of Betes Blog: Best 2014
"It’s that time of year again – we’re wrapping up the Best of the ‘Betes Blogs of 2014. I’ve visited the posts for all of this year’s hosts and compiled their lists of the best posts for this year. It was really interesting to look back at all the posts that have been written over this past year and see all the changes we have experienced.
[If I told you it actually took me HOURS to look up all the posts and write the code for all the links in all the categories, would that make you more likely to vote? Please vote!]
From now until 12:59:59 PM PST on December 31, 2014 visit the links below (all links open in a new window so you won’t lose your place!) to select your favorite posts from 2014. Then after the first of the year, we can see the Best of the ‘Betes Blogs of 2014 as we begin sharing about our meet-ups, d-mistakes, vlogs, advocacy, humor, and all the other best moments of the diabetes community in 2015."
If you want to read some of the best diabetes blog posts from 2014, this is the link for you. While you're there you can even vote for one in each category and help to decide the winners for 2014. No prizes go with the distinction... just a bit of bragging rights.
Psst... I won way back in March for a post by a Type Awesome (That's a D parent) for my blog titled 'Pitstop Fail' -- just saying ;)
But seriously, there is a ton of great writing and advocacy at this link, you'll be happy that you took the time to check them out here
Contest: Guess Arden's New Puppy's Name
Arden has been asking for a puppy forever and today she got her wish when her Christmas present arrived at the airport.
Arden spent the past weeks thinking of names for her new best friend, she took suggestions from family and friends, looked through baby name books, but in the end she decided on a name all on her own - and it's a diabetes centric name.
So the first person who can guess what Arden named her new puppy wins three pairs of blue circle shoe laces. The contest runs until someone gets the name correct. If more than one person guesses correctly I'll give three pairs to the first correct guess and one pair to each of the others but the contest will be shutdown twelve hours after the initial correct guess is made.
Puppy is three months old. He's a mix of French Bulldog and Boston Terrier. They call him a Faux French, he's such a cutie!
Okay, I'm exhausted from driving to the airport at four in the morning (he missed a connecting flight) so I'm going to take it easy while you try to figure out his name. Remember, it's diabetes related... good luck!
Only two rules: All guesses must be made in the comments of this post. Open to US and Canadian residents only for shipping cost reasons.
Arden named her new puppy Basal...
Don't Let Doctors Push a Pump on You
I've never told the story of the day that we chose Arden's insulin pump because it involves people that I love and who have done countless wonderful things for my family... f%&cing up.
But it's been a while and most of the people involved in the story have moved on to other places of employment... so what the hell.
Kelly, Arden and I stepped into the conference room at our children's hospital for a pump presentation. There was maybe a dozen families in attendance, each frightened, unsure and hoping for proper guidance. The people running the presentation spoke for a while, they taught us about pumping and then brought all of the different pumps out so that we could see them. Parents began to formulate questions, it was obvious to me by the trainers answers that they had their favorite pumps and were trying to lead people to certain devices.
Not wanting to be part of the folly, I went back to the demo pumps at the now abandoned display. This table was set up so specifically, like a display at a high-end retailer. Each pump was presented just so, documentation arranged off to their sides. It looked like the manufacturers sent a trainer, to train the pump trainers on how to make the pumps appealing.
Beyond the table was in a misshapen corner of the room where the trainers had abandoned the packing materials. The mess caught my eye and when it did, I noticed a little white box with green and blue printing that didn't look like it belonged with the garbage. I walked over to investigate and found an Omnipod starter kit that contained a PDM and sample pods.
"What's this", I asked a trainer.
"You don't want that", she replied.
Not being the kind of person that enjoys being told what I do or don't want, I responded with a bit of sarcasm, "Oh... why not?".
Then it happened, a person I was counting on to give me good advice, began just to say what ever they could think of to make me rejoin the group.
"Your daughter is small, you want a Ping" - "This one won't work on skinny kids" - "It doesn't have a small enough basal rate" - "You will be limited to sites" and my favorite, the scare tactic that they all love to pull out... "If you don't like it, you will be STUCK with it for four years because of (Cue scary music) your insurance... FOUR YEARS".
I didn't listen to her. I inspected the Omnipod and saw a lot that I liked. I saw different, innovative, the ability to change designs without having to repurchase and of course, I didn't see any tubing. We were sold and set off to show the pod to Arden so we could explain how it would work. In the time that we sat there talking to Arden, each trainer took a shot at scaring us into not choosing the Omnipod.
Fast-forward to two years later
Arden's Endo appointment ended and the NP asked if Arden could wait outside, she closed the door behind Arden and then said this.
"I wanted to take a moment to apologize to you..."
You see, two years prior at the pump training that I just told you about, the people in Arden's practice didn't have any experience with the Omnipod and they didn't want to be responsible for overseeing a device that they didn't understand. It wasn't the basal rate or a lack of sites that made each of them try to talk us out of what has become the foundation for how we keep our daughter happy and healthy. They weren't concerned medically and everything they said was one hundred percent horse shit. They were just covering their asses. Anyway, the NP goes on to tell me that because of the fantastic success that Arden is having with the Omnipod, the institution is going to start prescribing them to children.
There are a few professions that we are conditioned from birth to revere. Police officers, teachers and doctors are the big three. You listen to police, you respect your teachers and you assume that your doctor knows much better than you - and I would tell you that I believe those things are true a lot of the time, but not all of the time.
I tell you this story today because I recently heard about a family that was being forced away from a device that they wanted by their doctors. Medical professionals who defended their position with a lot "information" and "reasons". Doctors who took advantage of the patients desire to want to believe and listen to them – I deplore that. I've been around type I diabetes long enough to see this happen time and again and I wanted to offer you the moral support to trust yourself. I'm certainly not suggesting that all doctors are lying, or that every time you are prescribed something it's with deference to who the institution has business relationships with - but you know, it's worth considering.
You are the final word on what pump (or CGM) is right for your family. Do the research, ask the question and by all means take your medical teams advice seriously, but don't let anyone pressure you into a decision that you aren't comfortable with.
Stand firm the next time you feel pressured by your medical team to make a decision that you don't agree with but for all that is sacred, if a cop tells you to put your hands up.... please do it. ;)
If you're looking for a deeper conversation on this topic go to episode 124 of the Juicebox Podcast.
Korn Frontman Supporting JDRF with New Song
- This story is reposted in it's entirety with permission -
A huge thank you to the hard rock music news web site Blabbermouth.net for their generosity.
KORN's new song "So Unfair", which was inspired by frontman Jonathan Davis' youngest child, Zeppelin's battle with Type 1 diabetes, can be unlocked by going to this location and contributing to JDRF (formerly known as the Juvenile Diabetes Research Foundation), a major charitable 501(c)(3) organization dedicated to funding type 1 diabetes research.
Says Davis: "I want to support this wonderful organization that is fighting tooth and nail to help these little kids out. It's a horrible disease and I hate seeing kids in pain.
"Your gift will help JDRF to create a world without Type 1 Diabetes.
"Everyone who contributes to this campaign will receive our new song, 'So Unfair'. I'm also going to invite one lucky contributor and a friend to our private recording studio to create and record a song with me.
"Good luck and see you in the studio!"
Beyond the dietary changes and other lifestyle accommodations, Jonathan's son's struggle has prompted the singer and his wife Deven to become deeply involved in raising funds for research.
In a video message promoting the "So Unfair" campaign (see above), Jonathan said: "[My son's had Type 1 diabetes] for now a over a year. It's a battle for the parents, it's a battle for him, it's a battle for everybody. It's a horrible disease.
"I was out on the road. My wife was calling me, saying Zeppy was really tired and just being lethargic and laying around, and something was wrong. I got home from tour, and we took him to the hospital and told them what was going on. And they started running tests and doing all these things, and they decided to check his blood sugar, just to see. I think he was, at that time, 290. And so that set off a flag for Type 1 diabetes. His glucose was high. And when that happened, that changed my life forever. I found out my son had Type 1 diabetes."
He continued: "It's been very hard dealing with that, because there's a lot involved. I have to constantly monitor his glucose, I have to constantly hurt him and stick him with needles, and he doesn't understand.
"It's a horrible disease and I really wanna do whatever I can do to make a difference to help find a cure for this. 'Cause it just doesn't affect my son. I feel for everyone who has this disease. It's not fair at all. And so I started writing this song, 'So Unfair', about it. Because you're asking a child not to eat candy. I've gotta watch his carbs, I've gotta watch the sugar count, I've gotta watch everything. And how do you tell a child, 'You can't eat this. You can't do this. You can't do that.' So it's been a constant battle with me. I constantly worry about… At night, I've had him… his blood sugar drop really low where it'd scare where he won't look up. It's a very difficult thing to deal with. But there's one thing that keeps me going. I have a support group, which is my family, JDRF. They give me hope. They're searching for a cure constantly. I have hope that they're working on an artificial pancreas. I've been reading a lot about that."
Jonathan added: "Now [Zeppelin is] seven years old and he won't do the pump; he doesn't wanna use a pump. For me, it would be a lot better for him to use the pump, because he only has to get stuck one time every two days, but right now I'm sticking him about ten times a day, between finger checks and actual shots.
"He's a little boy, so when we got to sleep at night, he'll wake up in the middle of the night and try to sneak food and he'll wake up with high glucose in the morning.
"There's all kinds of challenges that I'm facing.
"Bottom line, I really wanna try and do something to help find a cure for this disease. And that's the bottom line. And I just wanted to express my frustration and my feelings in writing that song, 'So Unfair', and I wanted to put it out there and give all the proceeds to JDRF, so they can find a cure for this bullshit. And I'm just gonna say it, it's fucked up, and I want it to be gone. I don't want no one to suffer from this.
"If you can, buy the song, 'cause I want all the proceeds to go to this wonderful foundation that is fighting tooth and nail to help these little kids out.
"I hate seeing kids in pain; it just kills me. So buy the song. Let's find a cure for this bullshit, please."
"So Unfair" is available here for preview and download. www.rallysong.com/korn
You can read this story where it originated at http://www.blabbermouth.net/news/korn-singer-jonathan-davis-discusses-his-sons-battle-with-type-1-diabetes-video/