My thoughts on JDRF and the “c” word…

February 3, 2011

 

Catch me if I fall
I’m losing hold
I can’t just carry on this way
And every time
I turn away
Lose another blind game
The idea of perfection holds me
Suddenly I see you change
Everything at once
The same
But the mountain never moves
-The Cure

There are a lot of things that have been spinning around in my head for a while now that I’ve finally decided to actually write about. These thoughts have been fueled by a lot of things in recent months. It all really started with the inpatient artificial pancreas trial that I participated in a few months ago, which happened to coincide with the FDA Artificial Pancreas Workshop and lots of discussions that followed amongst members of the diabetes online community. These thoughts have certainly resurfaced because of the recent JDRF Research Summit held by the Capitol Chapter of JDRF and because of a recent Children with Diabetes forum discussion about the new President and CEO of JDRF. I don’t want to get into what was said in that thread in particular or my opinions on what people had to say. I just wanted to start out this post out with some background information that might make it easier to understand where I’m coming from and why I’m even writing this. I’m sorry if it comes off mostly as rambling, I’ve had a lot in my head and getting it out feels fantastic!

First off, I just want to say that I think an important role of JDRF is to stand up for ME and the entire diabetes community and represent us when addressing the government and society as a whole. Nothing made me want to devote my time and money more to JDRF than seeing Dr. Aaron Kowalski stand up at the FDA workshop and passionately confront them about why people in other countries have access to life saving technology and we do not. He was speaking for us with conviction and most importantly with the credentials to be taken seriously by the people who are making these types of decisions. I want my money to go to and organization like that. I am also very grateful to JDRF for allocating money to studies that would prove the efficacy, safety, and need for Continuous Glucose Monitoring so that more insurance companies would cover it for more people. It’s just another example of JDRF making sure that we are being heard and getting what we need to live successfully with diabetes.

I guess there aren’t many people out there anymore who remember the days of JDF. Ya know, before that pesky “R” was added to the acronym.  When I was a kid, the Juvenile Diabetes Foundation was not just for research. It always had a lot to do with research, but it also was about support. I know that my local chapter was founded because parents of children with diabetes and adults with diabetes needed a place to share experiences and meet others dealing with the same issues. They even had a social events committee!  My diabetes camp was actually founded because of funds allocated to that committee. When I was diagnosed in 1989 my family was very involved in JDF and in camp. We raised money for the walk every year, and we attended many events. However, once that “Research” word was thrown into the mix, my camp was sold and social events were no longer held. This, along with my increasing age, is what really drew me away from JDRF many years ago. It wasn’t until recently that I’ve gotten more involved again because of a lot of the changes that have been happening to take JDRF back to what it was originally. I love that they are reaching out to more people. I love that they realize how important outreach is to the community. I am really excited about the vision of JDRF’s new president, and I think it’s a great step forward to helping more people.

That being said, I’d like to address a few things that people seem to have a problem with in terms of JDRF, what they fund, and the elusive cure. I’ve heard/read many complaints about specific types of research that is going on and I would like to share my thoughts on them.

Anyone who is familiar with research that is going on right now and how the research and approval processes work, is acutely aware that we are nowhere near a cure right now. Honestly, it’s been quite awhile since I’ve even heard someone at JDRF say that we were 5-10 years away from an actual cure. And that is because no one has a clue how close we are to a cure. Researchers are constantly finding interesting ways to cure diabetes in mice, but none of them have ever really come close to working in humans. I really think that JDRF has become much more honest with its donors recently about this topic. I think it took them awhile to really get to a position where they even believed it themselves. This why the new President wants to shift the focus of what is happening at JDRF to include more things that can happen UNTIL there is a cure. It was mentioned several times at the Research Summit that diabetes is not simple, it’s not easy, it is complex, and it may not even be a single disease.

Something that was also discussed a lot at the Summit was preventing diabetes, and I’ve heard a lot of complaints about why JDRF should support people who don’t even HAVE diabetes yet. But this is actually important to all of us. Not just because we don’t want our children to become diabetes, but also because preventing it means answering one really big question. WHY? Why does diabetes happen? If we knew why it happened, and knew how to stop it, we’d be a huge step forward in reversing it as well. It seems that the major obstacle of making islet cell transplantation and stem cell research legitimate forms of treatment is that the immune system of someone with type 1 diabetes will usually attack those insulin-producing cells again. If researchers were able to turn off the autoimmune response in someone who would otherwise become type 1 diabetic, they might be able to turn off the same response in someone who is already type 1. There have even been studies that show that it could be possible to simply regenerate your own islet cells once that response is turned off.  Essentially, being able to prevent diabetes also means CURING diabetes.

I don’t think it’s a secret to anyone that I’m a big fan of the artificial pancreas project. I’ve seen a lot of people recently (and not so recently I suppose) who are frustrated with the JDRF for funding the Artificial Pancreas Project, and even more specifically some people who are upset about JDRF’s partnership with Dexcom and Animas. I think there’s a lot of confusion about this partnership and how the artificial pancreas project is actually working and what it’s purpose is.

JDRF is not just dumping money into private companies to help them make something they are going to make and sell anyway. One of the important roles of JDRF in this process is to coordinate research between different entities. Right now there are several sites doing research to find a predictive algorithm that would work in an artificial pancreas. They are each a little different. For example, Massachusetts General is working on a bi-hormonal device that uses glucagon along with insulin to prevent and treat low blood sugars. Meanwhile, at the University of Virginia (where I have participated as a subject) they are studying an algorithm using a low suspension technique, which only uses decreases in insulin doses and basals to prevent low blood sugar. These test sites have different techniques and tests but they are all testing an algorithm, which will do basically the same thing: dose insulin based on CGM data to obtain tighter glycemic control. They all also use different kinds of equipment all that is currently on the market in conjunction with a computer that contains their specific algorithm. For example, the inpatient study I participated in at UVA used a Dexcom 7 CGMS to measure my blood sugar, which was sent to the computer, and an older version of the Omnipod PDM to deliver the doses of insulin recommended by the computer. So, all they are testing at these hospitals is the algorithm. JDRF has teamed up with Dexcom and Animas to try to develop a device that would be able to effectively contain all the components of an artificial pancreas: CGM, algorithm, and pump. It is an important aspect of development in creating a useable device that will be available to the public.

What I want for the future of treatment is for any device that will be able to relieve of us of the hardest parts of living with diabetes. What most people don’t understand is that the needles, pricks, tubes, and machines are definitely NOT the hardest part. I’ve blogged about this before, but I can never say it enough. The hardest part of diabetes is the fear. It’s being afraid to fall asleep and not wake up. It’s being afraid that every little mg/dL point over normal is one tiny step closer to debilitating complications. I can deal with the rest. I’m pretty sure anyone could if they had to. It’s the fear and frustration that makes diabetes so hard to live with.

I wouldn’t say that I have lost faith in finding a cure. I hope everyday for a true 100% cure will happen in my lifetime. But, I’ve known so many people now that had that same hope and did not live to see it. I’ve come to accept that it might not happen… that I don’t NEED it to happen. I DO NOT NEED A CURE FOR DIABETES. What I need is my feet, my heart, my eyes, and my kidneys. I need to live a long, healthy life. I will support whatever cause I think will make that happen. Right now, I whole-heartedly believe in the Artificial Pancreas Project, the JDRF, and the hundreds of people who are working hard to research and make tighter glycemic control a reality for those of us who are living with type 1 diabetes.

It really pains to think about the people I’ve known who fought so hard against this disease and fought so hard for better treatments and better lives and who are no longer here because those treatments never came. Those people are why I’m fighting for MORE than a cure!

In memory of… Nikki, Barry, and Cynthia.


UVA Endos Speech

September 2, 2010

First off, I love my new diabetes educator. She is awesome. She loves my outlook on diabetes and totally agrees with it. Despite not being diabetic or having a kid with diabetes, she seems to understand a lot about daily life and frustrations of dealing with it every second of the day. She also understands, however, that she doesn’t know it all. And that most doctors sure as HECK don’t understand it. So…

She has asked me to speak at a luncheon for the endocrinology fellows at the University of Virginia (where I am currently a patient). I’m very excited… but very nervous. I’m not the most comfortable at public speaking. Although, most of the major speeches I’ve given in my life were about diabetes, and I feel pretty darn comfortable talking about it. But this…. this is different. I will speaking in front of my own doctor as well as the doctors who are working with me on the study I’m in (more on that once I’m finished with it). And all of the other endocrinologists at UVA which has a very prestigious and well established program.

My speech is going to be titled, “A Patient Perspective on CGMS and Insulin Pump Therapy.” So I think I will basically tell my story from the beginning. I guess they’re mostly used to hearing complaints about CGMS so my CDE wanted me to talk about my positive experiences with it. I also want to talk a bit more broadly about why I’ve been soon successful in diabetes in general. I want to tell them that the best way to live with diabetes is to live with a positive outlook. I want to tell them they shouldn’t scold patients or blame them for bad numbers.

I want to make this speech… not boring. And I want it to be effective. And informative. They’re giving me an entire hour to speak too! So I want it to be long enough. Ha!

I guess what I’m saying is… does anyone have anything they think should be included in such a presentation? I want to make sure I cover all the bases and get the whole message across! Oh and my speech is October 19th. So I have awhile to figure out my presentation.


Why should you care about diabetes camp?

May 26, 2010

First, a little announcement/disclaimer from me: I have recently been hired as the Camp Director for the Harrisburg Diabetic Youth Camp. I am thrilled about it and excited to make camp successful for many years to come. This post is directly dealing with camp and why I think it is important so I just wanted to put that out there so you all know the perspective I’m coming from now. I’ve always been very pro-camp and have always done whatever I could to promote but it is kind of my job now. However, I’d be writing this post no matter what and this post has absolutely nothing to do with me being camp director. Ok, now that that’s out of the way…

Since it’s Spring, and almost Summer, and camp is sneaking up on us, and since there has been a few mentions of diabetes camping thanks to Bret Michaels’s appearance on Celebrity Apprentice, I thought I’d write a post about WHY diabetes camp is important. I know a lot of people might not think that it is. I know that a lot of people might equate diabetes camp to some other kind of camp like basketball or drama or girl scout camp. They think it’s just a grouping of kids who have something in common, and it’s not a huge deal.

Our mission at HDYC has always been to give kids a normal camp experience. Our founders wanted to give kids with diabetes the opportunity to have the same camping adventures that their non-diabetic peers were having. Since then, however, camp has evolved into something far more important than just a campfire and a sing-along (although those are clearly important to the whole experience).

To put it simply, diabetes camp is extremely beneficial to children with diabetes. There have been many studies done to prove this including on in Turkey, one at the Joslin Diabetes Center, and one that Setebaid Services (the organization that runs my camp) has participated in. Kids who attend diabetes camp learn more about diabetes management and how to independently care for themselves. Kids who have attended camp have a better knowledge of their own care.

How and why does diabetes camp make such a positive impact on kids? Well, for many reasons. As we all know, people with diabetes have a much higher risk of developing depression than people who don’t have diabetes. The stress involved with dealing with this 24/7/365 disease can make anyone feel pretty awful, especially if a person has no outlet. Isolation is a huge problem when it comes to diabetes. People with diabetes often feel like they are all alone and no one understands them. This can make caring for the diabetic body even more stressful and difficult. Camp helps resolve this problem. When you come to camp, you meet all kinds of people with diabetes who are willing to talk about anything and everything involved with diabetes. Most campers and staff members keep in touch year-round, especially now that things like email and Facebook exist.

These people are also a fantastic resource for any problems you might be having. From where to try a new infusion site to how to bolus for something crazy to “OMG I ran out of test strips and can’t get anymore,” there is almost always someone to help you out. Some of the people at camp have had diabetes for decades, and can offer the best advice you could ever ask for. Most kids with diabetes see an endocrinologist and some see a diabetes educator, but there is nothing like learning from someone who lives with diabetes everyday.

I like to think that one of the major reasons I am so healthy today is because of camp. It has kept me sane through nearly 21 years of living with diabetes. I met one of my best friends at diabetes camp. My whole life has really been better because I went to camp. I know a lot of people don’t  have quite this much of an attachment to camp, but most are very positively influenced by it and would probably say it changed their lives for the better. In fact, I’ve gotten in contact (thanks to Facebook) with several of our HDYC alumni, and they all still talk about how much they loved camp.

If you or your kiddo hasn’t been to camp, please think about going! And you don’t have to be a camper to go to camp! Being a counselor is just as rewarding. Check out the Diabetes Education and Camping (DECA) website to find a camp near you.

And if you’re looking for a diabetes-related cause to support other than the big ones, please consider donating to your local diabetes camp! It may not sound as important as research for a cure, but it really truly helps keep people alive and healthy!


I got some bad news today

November 23, 2009

Let me start by giving you a little history of my experience with doctors and diabetes. From diagnosis (at age 3) until last year (with only a brief hiatus when I was young) I had been going to the same doctor. He technically was not an endocrinologist, but was a pediatrician who specialized in children with diabetes. He was my lifesaver. He was also the doctor at the camp I’ve gone to since I was 7. In fact, he’s pretty much the reason why I started going to camp in the first place. He got me on the pump. He was amazing. I’m pretty sure I ended up being his oldest patient ever. I was 22 when I had my last appointment with him. And the reason I stopped going to him was because he was retiring and downsizing his patient load. We ended every appointment with a hug. He came to my wedding. We danced at my wedding. He was/is very important to me! I trusted him with my diabetes for nearly 20 years.

The timing kind of ended up working out perfectly. Jeff and I were engaged so I knew I was going to be moving to Virginia.

I, however, was very worried about trying to find an endocrinologist to treat my diabetes. I had actually seen endos in the past but only for my thyroid because I was diagnosed with Grave’s disease a few years ago which is a form of hyperthyroidism. None of my experiences with these doctors were very pleasant. The first doc I saw was ok even though she had a very thick accent and was hard to understand at times. Everything she said did make sense according to all of the research I had done right after my Grave’s diagnosis. I lost that doctor because something happened with her visa and she was no longer able to practice. The last thing I want is to have my doctor constantly changing. It’s much better to have a doc who knows your patterns and your history.

The next doc I saw was really freaking scary. He was very old. He told me he doesn’t “do” insulin pumps. He also almost poked my eyes out when measuring my eyes (enlarged eyes is a symptom of Grave’s). No really, he almost poked out my eyes. He made the measuring thing so small that instead of touching the very outside corner of my eyes, it was going to go directly into my pupils. The look on my mom’s face was classic. And I’m pretty sure I backed away pretty dramatically. He also only took this measurement once so I’m really not sure how he would be able to tell if my eyes were changing in size.

So, the point is, I was really not so excited about having to find a full time endocrinologist to take care of my diabetes.

However, I pretty much I hit jackpot (again). I did some research online and ended up finding an incredible doctor! He has a private practice here in Charlottesville which is co-owned by an internal medicine doctor. It is a small practice. There’s no revolving door of doctors. I was even more excited when I found out that this endo is actually diabetic himself! At my first appointment we discussed different types of pumps and meters and CGMS. He told me about all kinds of research that’s going on. I was in diabetic heaven! He also hooked me up with every lab test necessary. I had never been tested for a Vitamin D deficiency before and it turns out I am actually deficient in Vitamin D. My new doc explained to me that there are studies going on linking D deficiencies to autoimmune disorders including diabetes and Grave’s disease. I felt like so much of my life had been explained. I looked at the timing of my diagnoses and the depression I tend to go into in the winter time. It just felt really good that it could be the answer to my life long unanswered question of “Why me?”

Jeff and I have also been going to the other doc in the office as our primary care physician. He is simply… amazing! He has helped us so much. Jeff hurt his back about a month after the wedding and has been on medical leave. And our doc has done literally everything possible to make Jeff feel better and make him as healthy as possible.

Jeff had an appointment with our PCP today and I tagged along (like I usually do because it’s like visiting family). In the middle of the appointment our doc says, “Ooooooh I have some bad news for you guys… We’re moving.” I felt my heart hit the floor! It turns out because of some changes to the Virginia State Constitution in recent years which are incredibly discriminatory, our doctors have to move because their lawyer doesn’t think their business and finances are safe. Virginia apparently is very harshly and extremely against gay marriages, civil unions, or any kind of domestic partnerships to the point where they are driving all of the gay couples out of Virginia. Lovely.

So, my doctors are leaving me for a state that will welcome them with open arms. And I don’t blame them. But now I am stuck going through the process all over again. I’ve been pretty depressed all day. I’m really hoping I can get lucky for a third time but I know the chances of that are slim. I am constantly hearing stories from other diabetics about how they hate their endos. Not to mention I will likely have a PCP who is clueless about diabetes. Ugh.

I really wish the Virginia House of Delegates and most of the Commonwealth’s voters weren’t bigoted jerks. I really wish they would realize how their stupid and discriminatory amendment was hurting more people than they realize! Charlottesville is losing two of its best doctors and it’s solely the fault of the awful amendment.


Famous People with Diabetes

November 19, 2009

Something that has always irritated me is how people with diabetes who happen to be famous don’t talk about diabetes enough in my opinion. I feel like if I had the power to inform millions more people about diabetes I definitely would. I see misinformation as one of the biggest problems facing diabetics. It also impedes efforts to raise money for research, support, and education.

Therefore I have decided to share my thoughts on a few celebrities and how they talk about diabetes. I’ve included videos as examples of how I’ve derived my opinions.

Jay Cutler

I think Jay has done a great job talking about diabetes. Being newly diagnosed, he’s a great spokesperson for other newly diagnosed diabetics. He often talks about what it felt like before and after the diagnosis as well as what it’s like to play professional football with diabetes. He is truly a great role model and spokesperson for people with diabetes.

Nick Jonas

Nick has become a great asset to the diabetes community! He has been able to reach millions of young people who previously knew very little about diabetes if anything at all. I have actually seen little girls out in public wearing t-shirts in support of Nick Jonas and his diabetes. Every single night he includes diabetes in his shows and talks about the trials and tribulations of living with diabetes on the road. He discusses how tough it is but how it doesn’t control his life. They even sell those previously mentioned shirts at their concerts with proceeds benefiting diabetes charities. I personally am not a Jonas Brothers fan, but I am SO excited about Nick Jonas!

Elliot Yamin

Another one of my favorites. I think of all the diabetic celebrities (with the exception maybe of Mary Tyler Moore) he does the most! He is usually in attendance at the JDRF gala here in Central Virginia, and I’ve seen video of him doing the LA walk.
I remember when he was on American Idol and him and his mother talking about diabetes. He even wore one of those silicone diabetes bracelets every show. I even have a World Diabetes Day pin that was given to me by a friend who bought it at an Elliot Yamin concert. I absolutely love what he is doing.

Bret Michaels

Oh Bret… There is so much I could say… I know for a fact that he can properly pronounce the world “diabetes” so I have NO idea why he keeps saying “die-uh-beet-us”. He always seems like he is proud to be a diabetic, but it always seems like just a weird act. I can’t say I’m a huge Rock of Love fan, but I did watch the first season and most of the second. I only remember one episode where he truly addressed his diabetes. It was the very last one. He was with the one girl and he went low in a go-cart. And it was kind of funny to watch because you could tell by the look on his face that he was low. But that was the good part. There was also a scene where he’s sitting at a table for dinner with a girl and he says “If I pass out, just shove this in my a**” and put a glucagon package on the table. It made me scream at the TV. I do give Bret credit for not just giving money to big diabetes organizations but also helping fund camperships so diabetic kids can go to camp. It’s a cause near and dear to my heart as I know it is with Bret. But still, some of the junk he says just doesn’t make any sense and he frustrates me to an incredible degree.

Halle Berry

NO ONE MAKES ME ANGRIER THAN HALLE BERRY! Even before this video I used to get so upset when she’d speak. She cries about being a black woman but never even mentions she has type one diabetes until she claims she got rid of if. This video just made it exponentially worse. Besides her claiming to get rid of her type one diabetes, she says that she thinks she had it as a kid and went diagnosed. Halle clearly has never met a child who has gone “undiagnosed” for a very long time. I had a kid at a camp event who had gone TWO YEARS with symptoms of diabetes and was nearly in a coma. You don’t go any longer than that without being diagnosed or going into a coma and dying. She clearly has NO idea what she is talking about. I don’t know what exactly her situation is, but I DO know that she is not and never was a type one diabetic.

Whew. Ok. Sorry I tend to rant when it comes to Bret Michaels and Halle Berry. Does anyone else have opinions on these celebrities? Or other diabetic celebrities? I know I didn’t include Mary or most of the type two celebrities you see in commercials all the time. But these are the ones that pop into my little head the most.


Help Cure “Childhood Diabetes”

November 19, 2009

Yes, I also cringed when I read that title the first time. There are so many things wrong with the phrase “childhood diabetes” and the term seems to follow me wherever I go. The reasons behind my disdain are for another blog some other day. Instead, I’d like you to meet what may be the cure for “childhood diabetes.”

Bacillus Calmette-Guerin (BCG) is a generic vaccine that is used to prevent tuberculosis. However, it has recently been discoverd by Dr. Denise Faustman to also stop the autoimmune reaction in mice that causes type one diabetes and also prevents new beta cells from re-growing. That’s right. Beta cells can REGROW!

Now I don’t really want to talk about the science behind this because it’s relatively complicated for anyone who isn’t a nerd for diabetes research. But the jist is, it is incredibly promising research which could lead to a remarkably inexpensive cure to diabetes that could be administered by a simple injection. Amazing!

The reason I felt like sharing this story today is because of how this research is being funded. Dr. Faustman has been unable to acquire government funds for research. Her application for funds from the Juvenile Diabetes Research Foundation (JDRF) has also been denied. Therefore, her research is being completely privately funded by donors. Through the incredibly generosity of Lee Iacocca (of Chevrolet fame) Dr. Faustman was able to get the money to fund Phase I. However, anyone familiar with the FDA and getting drugs passed through it, knows how expensive it can be!

Therefore, a group of parents of children with type one have started a grassroots organization to directly fund Dr. Faustman’s research. There organization is called Help Cure Childhood Diabetes.

Despite the name, I found this to be an incredibly amazing idea. I have always heard skeptics talk about how drug companies don’t want to cure diabetes because then they lose all the money they are making off of us. I’ve also heard people say that groups like JDRF and ADA also don’t want to cure diabetes because then they would all be out of a job. I have always told myself that this is all completely stupid but I do often wonder if I am being naive. As a believer in capitalism I can see how there really wouldn’t be any financial incentive for a cure for diabetes. Which is why we need people with OTHER incentives to help find the cure.

I really, really love this concept and I truly hope more of it comes about!

PS. When you go to Help Cure Childhood Diabetes make sure you look at the “Meet the Chldren” page. It’ll make you smile and cry. They remind me of me. And of all my campers.


World Diabetes Day

November 16, 2009

Here are pictures of what we did for World Diabetes Day. They were taken at the new Free Speech Monument outside of city hall in Charlottesville, VA (the home of Thomas Jefferson!).

Free Speach 1

Free Speech 3

Free Speech 4

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IMG_1340

IMG_1346

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Overall it was a good day. I wish there were things to do in Charlottesville for World Diabetes Day but our diabetes community here isn’t very organized. I’m hoping to help try to change that here soon.

I did participate in the Big Blue Test. It allowed me to experience the true roller coaster of living with diabetes. I went from 341 to 45 in less than 3 hours. It was a bit frightening to say the least.

How as everyone else’s WDD?? Anyone do anything cool?