2009 National Youth Advocate Christian Stokes
Meet Christian Stokes, the 2009 National Youth Advocate. Christian was diagnosed with type 1 diabetes when he was 15 months old. "I've had diabetes for as long as I can remember." said Christian. "I hope that we find a cure soon, so I can know what it feels like to live without diabetes."
As the National Youth Advocate, Christian spent the year traveling around the country encouraging young people and adults to get involved in the fight against diabetes. He also met with elected officials and encouraged them to increase funding for diabetes research and prevention, ensure people with diabetes have access to quality and affordable health care, and make sure people with diabetes are not discriminated against in school or in the workplace.
- Age: 18
- Location: Minneapolis, MN
- Favorite Subject: Economics, Biology, Chemistry, Music
- Favorite Sports: Wrestling and Football
- Future career plans: Become an epidemiologist
- Goals as the National Youth Advocate: “I want to raise awareness about the fact that diabetes is a serious disease. But I also want to tell kids with diabetes that even though having diabetes is hard, it doesn’t mean you can’t achieve your goals.”
Christian's 2009 Blog Entries
December 13, 2009 – Finals Week
Finals week is fast approaching. With the advent of finals week comes one of the most stressful events in diabetes, the marathon the test. Tests are intrinsically stressful, but having diabetes makes them all the harder. With my future of being a doctor riding on my grades. As everyone who has diabetes knows stress toys with your blood sugars and the stress of two three hour tests in one day will wreak unknown havoc. I have already written my teachers to tell them of my situation and they all understand and have given me extra consideration and special test taking circumstances if I ask for them. Even though my teachers have given me great support and I am well prepared for all of the tests I am still worried about the exams.
Wish me luck I shall need it!!!
November 25, 2009 – Last Trip to Virginia
Alexandria Virginia, home to one of the greatest non-profits to ever grace the earth! I recently had my final trip for the American Diabetes Association as the National Youth Advocate. It was a bitter sweet trip; on one hand I had an amazing time and I was able to look back on all that I had accomplished with the help of the staff and volunteers at the Association, but on the other hand it means the end of a chapter of my life. This has been the single greatest opportunity of my life so far and I cannot thank everyone enough. Everyone who has read my blog and everyone who has believed in me I thank you humbly and graciously. I could not have done any of this without you. The diabetes community is strong and we are close to finding a cure. We have the supporters and the strength all we need to do is join together for one final push. Will you help us with the final push?
October 3, 2009 - Lions Club Meeting
What act can be called truly kind and selfless? Some would say that no act can be truly selfless. I would counter that with saying that welcoming someone who is not like you or not apart of your group is truly selfless. When I went to the Lions Club Diabetes meeting in St. Cloud, MN, I was welcomed with more open arms then I could have ever anticipated.
I would like to extend my deepest thanks to Bruce Klein and all of the members of the Lions Club Diabetes Foundation board of directors for having me and listening to what I had to say. I hope that it will be the beginning of a fruitful friendship between the MN Lions diabetes foundation INC and the American Diabetes Association.
I spoke their as a kid with diabetes and how they as an organization can help in the diabetes community. I learned that they have been recently formed and would like to get involved with the ADA, Both the Lions Club and ADA have a lot to offer the diabetes community imagine what would happen if they teamed up. I was also honored with the Lions Club Dream catcher award one which is rarely given and is a high honor. I am so grateful for the Lions Club.
September 26, 2009 - Minnesota Step Out Kickoff
During my term as ADA's National Youth Advocate I have had the opportunity to do many fun and memorable things. I have given speeches at galas; spoken with top researchers and met many amazing kids I will always remember.
None of them have I been more nervous for then kicking off the Minnesota Step Out: Walk to Fight Diabetes.
I was shaking before my speech. The last time I was this afraid before a speech I was 14. Now many people might divine the reason of my nervousness as just fear of public speaking. I know that they would be way off. I was afraid of letting down my home state.; the people who believed in me and supported me when I was trying to become the National Youth Advocate. Also I didn’t want to let down all of the people who came out to fight the evil that is diabetes.
I cannot thank them enough for what they are doing for people who are afflicted by diabetes like me. So from the bottom of my heart I would like to thank everyone who came to Step Out; you are the people our world needs more of. Thank you for your commitment.
September 18, 2009—Detroit Diabetes Expo
A few weeks ago I was in Detroit for their annual ADA Diabetes Expo. It was a great time! I met so many great people there and I must thank them for welcoming me with open arms and being so gracious.
While I was there I manned then the American Diabetes Association’s main booth at the Expo. I answered questions about the safe at school program and the advocacy division of the American Diabetes Association. I was there to answer questions about the ADA and what the ADA does for kids and teenagers with diabetes.
Also in addition to being a knowledge base I also was a resource for the kids who attended the Expo. I worked the children’s booth along with the main booth. I had so much fun with the kids. There was a miniature reptile house along with Nintendo Wii, a photo booth and finally a face painting station. All the kids seemed to absolutely love it. When the Expo ended they seemed as if they didn't want to leave.
September 15, 2009—Finally Moved In!
I have moved into my new home; my dorm room at Augsburg College. I love it! I have all the freedom to do what I want when I want without parental permission!
However all of this freedom comes with a price. My meals are no longer eaten at regular times, and sometimes I don't even have time to eat. This presents a difficult challenge for people with diabetes. I have to be even more aware of my blood sugars, because I may not be able to eat at the time my body wants to.
I have had to completely change my diabetes routine to accommodate my new schedule. It's been a rough few days since I have moved in (blood sugar-wise) but I know that I will get used to my schedule, and be able to manage my disease again with the best of 'em.
Until next time,
August 25, 2009—Getting ready for college
Well the time has finally come. I am getting all of my stuff packed and organized for college. It's a bit tougher for me than most of my friends because I have to prepare
for college with diabetes.
I have to make doubly sure I have everything with me, because if I should go really low or really high, I don't have my parents there to help me out. I need to pay close attention to making sure I have all my stuff with me, like my infusion sets, insulin, and testing supplies. I know I'm going to need to plan ahead. I am so nervous that I am going to forget something crucial like an inserter or insulin.
But I am very nervous and excited to start college. It's a whole new beginning and I'm going to make the very best of it. Wish me luck with all of my preparations and upcoming studying!
August 6, 2009—Blog on health care reform
Health Care reform maybe the biggest hot button topic of this year. Who should be covered? How much should be covered? What should it cost? All of these questions are legitimate, but I would like to take the time to focus on just one facet of the health care reform bill: coverage for people with diabetes. Every person who lives with diabetes needs to be covered. The cost of daily care for people with diabetes is minimal compared to the cost of taking care of the complications that can arise from a lack of access to good health care.
If the current system doesn't change, when I graduate college and look for a job, I could be denied health insurance just because I have diabetes. If that happened my life would take a turn for the worse. I might not be able to check my blood sugar as often as I need to, or give myself the amount of needed insulin because of the price. The complications of diabetes are deadly. The lack of insurance, or inadequate insurance could effectively sign my death certificate.
This month, I hope everyone will talk to their Members of Congress while they are back at home, and ask them to support health care reform. I cannot stress the importance of health care coverage for people with diabetes. And we all need to make sure that Congress knows this. Visit Health Care Reform to read more about the American Diabetes Association's efforts on this important issue. Visit the "Updates" page for tips on in-district meetings, town hall meetings, and more ways to make your voice heard this August!
July 28, 2009
Texas: Probably one of the hottest places on earth, at least in comparison to Minnesota! Last week, I had the pleasure of attending Camp Rainbow, an American Diabetes Association camp in Spring, TX.
I have never wanted to do so many things in such little time! There was horseback riding, a ropes course, a rock wall, a pool and all the buildings were AIR CONDITIONED! It was great.
The best part of it was that I got to spend the entire day with the rockin' campers! I spoke to them about the importance of their own voice in the fight against diabetes I told them that if they speak up about what it's like to live with diabetes, they can make a difference in this fight.
I was so glad that I got to spend the entire day at the camp, even if I did need an industrial size fan to keep cool. I met new friends and many great advocates. They are going to change the world, and possibly become future National Youth Advocates!
July 13, 2009
Well the CWD conference is over, and it was a fantastic time! This conference brought kids from all over the world together to unite against one thing, diabetes. It was great to see all of these children sharing their experiences and belonging to a bigger community. Most children with diabetes, like me, grow up without being around any other kids with diabetes. Having diabetes can be very isolating, and coming to this conference allows all of us to feel like we are a part of a bigger family. I really hope that I can go back next year. It was a fantastic experience that I will never forget. Thank you Children With Diabetes for a fantastic time.
July 10, 2009
Wisdom. Everybody needs it. For those of you who have been newly diagnosed with diabetes or are having a hard time dealing with it in your family life, you especially need wisdom.
Everyday Wisdom is a new tool kit from the American Diabetes Association to help parents, grandparents, kids and siblings alike communicate about the struggles children with diabetes face on an everyday basis. Everyday Wisdom contains all of the tools that parents and kids need to open up lines of communication and teach each other how to manage diabetes in their family life.
For the parents, it gives tips on how to talk to their children about diabetes without overwhelming them. It teaches them the mistakes that most parents make while trying to help their kids with diabetes (i.e. nagging!). It is essentially a diabetes strategy for the parents, a guide to diabetes that teaches them what it took other parents years to learn.
For the kids, Everyday Wisdom is the quick reference guide on everything diabetes. It illustrates every major facet of diabetes life and how to handle it: from traveling all the way to communicating with others. It helps put kids on the path to managing their disease themselves and coping with it.
I think that the teen group is most often left out in diabetes literature - but not in Everyday Wisdom. There is a specific book for teens to read and it answers all of the essential teen questions about driving, dating and going to parties. It's a really great resource.
Many times siblings will feel alone or neglected in the discussions about diabetes. Everyday Wisdom teaches them how to help their brother or sister deal with their disease and build a stronger sibling bond.
All of the included booklets, the parents, kids, teens and siblings guides, direct the family toward one major idea: start the conversation. Don't be afraid to share what you are actually feeling about diabetes. There is even a game included, which can be played as a family, that I guarantee will bring to light to what each member of your family is going through. Here at the Children with Diabetes conference, lots of parents and grandparents have been saying Everyday Wisdom is exactly what they need to deal with diabetes everyday.
Log on to diabetes.org/familylink or call 1-800-DIABETES to get your free Everyday Wisdom kit. It's definitely worth the time for a stronger, healthier family.
July 10, 2009
Amusement parks are all fun and games right? Well, not so fast. Amusement parks hold many challenges for people with diabetes. I've been thinking about this a lot since I got to Orlando and heard kids and parents talking about managing diabetes at an amusement park. Many aspects of the park i.e. the food, walking, heat, are all hurdles by themselves, but thrown together they can be a real challenge.
One day a couple of years ago, I was at the local amusement park in Minnesota. I was having a great time. I was counting the carbs for the cotton candy and correcting for exercise. I thought I had it all figured out (one thing I've learned with having diabetes for so long is that you never say you have it "figured out.").
About three hours into my awesome day of rollercoaster mayhem, I crashed. I had checked myself before going on the mega coaster, and I was fine. As I was leaving the ride, I started to feel a bit woozy. I chalked it up to it just being the adrenaline of speeding around a metal track at 75 MPH. I continued walking and heading to the next attraction and when I got there realized that I could not remember my entire walk there. I had walked across the entire park and couldn't remember doing it. I decided I should probably sit down and check. My blood sugar was 32. I quickly reached into my bag and grabbed as many snacks and juice as possible and started to eat. I cannot say for sure exactly why this low happened, but I think it has to do with the combination of lots of walking, high heat, adrenaline, sugary and fatty foods and bodily stress.
So now when I go to an amusement park, I make sure to bring plenty of snacks and test often, so that I can have fun with my friends and still take care of my diabetes. I'll be heading to some parks tomorrow, so I will be ready!
July 9, 2009
Working. Many people hate it; others take it for granted. I am not one of those people. Did you know that up until the mid 1990s people with diabetes were not allowed to work for UPS or serve in law enforcement? On numerous occasions, people with diabetes were told that they can no longer be employed simply because they have diabetes. Their level of control had absolutely nothing to do with their dismissal; in fact most of them were in good control. It was discrimination, pure and simple.
Enter John Griffin, a lawyer from Texas who spoke this morning at the Children with Diabetes Conference. When he started taking on cases about diabetes and employment discrimination, he had no specific interest in diabetes (he had relatives with it). But he took these cases. He fought for their rights. He gave them a voice.
In the beginning, these cases were thrown out of court. This happened time and time again, but John Griffin did not quit. He kept at it and started to win. He brought cases all the way to the second highest court in the United States and he won.
After these cases of unjust firings, he decided the United States needed a change in the coverage of people with diabetes under the Americans with disabilities act. John teamed up with the American Diabetes Association and many other legal advocacy volunteers to push for a law to revise the Americans with Disabilities Act so that it covers all people with diabetes. Last year, they were successful. With the passing of that law, it is now illegal to fire anyone for having diabetes and it's illegal to even ask if you have diabetes. Visit Discrimination to learn more about this important law.
So, the next time you are hired for a job, take time to think about all the people that went before you, blazing the trail for your rights in the workplace. Don't take your next job for granted.
July 8, 2009
Just arrived in Orlando!
This is my first time at the Children with Diabetes' Friends for Life conference, which is held every year here in Orlando. Because this conference focuses on families with kids with diabetes, Orlando is a neat place to hold the conference. On the last full day of the conference everyone is invited to go to the Disney park with the new friends and families they've met.
This year, the conference will be full of kids with diabetes, their parents and siblings and other family members, adults with type 1 diabetes, and companies that make stuff like diabetes supplies and organizations that provide people with programs and information about diabetes – like ADA.
I got here tonight because that's when the expo started – there are lots of different vendors at the expo. Part of my role here is working at the ADA booth – which isn't really work. I get to meet people and other kids with diabetes and their families. At the ADA booth we also have volunteers to talk about the Step Out fundraising event, the national Family Link program to match families who are affected by diabetes with one another, and a drawing for a flip video camera! They also have a family tournament scheduled to take place over the next few days – but I'll write about that later.
With all the stuff scheduled for the next few days, I can tell you now that it's going to be a busy week, but I'm looking forward to it. There are sessions and focus groups, networking opportunities and tons of events – banquets, dances, a 3k "fun run" and sessions about everything diabetes – the physical, emotional, psychosocial, legal and medical – for everyone facing this disease, whether recently diagnosed or a veteran of many years. And of course, at the end of it all, there is Disney World!
Getting ready for a full few days, but I'll keep you posted about what's going on here. Check back tomorrow!
July 1, 2009
Next week, I am heading down to Disney World to attend the Children with Diabetes Friends for Life Conference! I've never been before, so I'm looking forward to meeting families affected by diabetes from all over the country, spending time at the American Diabetes Association booth in the Exhibit Hall, and attending some sessions. To learn more about the conference visit www.childrenwithdiabetes.com/ffl.
I'm especially looking forward to a presentation about diabetes and employment discrimination. As someone with type 1 who will be entering the work force in a few years, I need to know my rights when it comes to diabetes in the workplace. I'll be blogging live from the American Diabetes Association booth from July 8 – July 10, so check back then!
How many people associate North Carolina with a life changing experience? I would assume not many, but for those children living with type 1 diabetes, it truly is. I was at Camp Carolina Trails this past weekend and I was totally blown away. The campers become a family. The campers continue coming back to the camp every summer, and eventually become counselors and the counselors continue to stay for years.
Seeing this completely rocked my world. I had never seen such a close-knit community of people with diabetes outside of a medical environment. The camp director knew each one of the over 200 kids by name. I was completely aghast at how amazing this was and I am hopefully going to go back next year to become a counselor. I would encourage all young people with type 1 diabetes to attend an ADA Diabetes camp. I was there for 4 hours and it changed my life; imagine what will happen with 7 days.
After Camp Carolina Trails I had the privilege of speaking at the Father of the Year Gala in Charlotte, NC. The ceremony was quite lovely and all of the fathers deserving. There is one thing I wish about that event though; I wish I could have gone with my dad.
I can't believe it, but I am halfway through my year as the National Youth Advocate, and now the American Diabetes Association is looking for the 2010 National Youth Advocate!
Are you a young person with diabetes, who has a passion for advocacy and wants to help in the fight against diabetes? Then you should apply to be the next National Youth Advocate!
The position is open to young people ages 12-17 years old (as of October 1) with type 1 or type 2 diabetes. Candidates should have experience with advocacy at the ADA, a willingness to speak publicly at various events throughout the year, and be available to travel with a parent or guardian. If you know a young person whom you think would excel in this position, please encourage him/her to apply! The application deadline is October 1st. You can visit National Youth Advocate for more information and to download an application. If you have any questions, email MakingNoise@diabetes.org.
June 8, 2009
Finally a cure for diabetes?!? Well, not so fast.
I just attended a session on islet cell transplants in rodents and humans. While doctors are able to technically get rid of type 1 diabetes with islet cell transplants, it may not be the miracle cure we have all been waiting for. There are many limitations to islet cell transplants; there are more people needing islet cells then donors; the treatments can be worse than actually having diabetes, and the islet cells only last an average of three years. There are many clinical trials going on for islet cell transplantation.
So, do the gains of islet cell transplant outweigh the risks? While transplantation is a good option for those whose diabetes is not well controlled, the drugs and the invasive surgery add up to a cost which can be really high. Don't get me wrong, I hate diabetes and would do just about anything to get rid of it, but I'm not sure if I would want to suffer through life-long problems with immunosuppressant drugs.
But researchers are working hard to improve these treatments and make them more accessible for everyone with diabetes. So keep an eye out for new reports and research on this topic. This is a very promising time for diabetes. We are almost there; we just need to hang on just a little longer.
Filled with hope,
June 8, 2009
Did you know exercise causes low night blood sugar? (Well duh!!!) At the 69th Scientific Sessions I have attended two symposiums on athletics and diabetes. One of the symposiums focused mainly on the affect of exercise on night time blood glucose levels. We all know that exercise leads to low BG in the middle of the night, but what a lot of us do not know is how to fight this demon. I attended a lecture which reported the findings of a study focusing on eliminating nighttime hypoglycemia. There were four main groups in the study; a control (who did nothing with insulin or snacks), one who ate a snack before bed, one who reduced their night time basal rate by 20%, and one who took 2.5mg of a drug designed to raise blood sugar.
The results of the study were quite interesting. The snack group suffered higher instances of hyperglycemia after the snack, while still suffering from hypoglycemia during the middle of the night. The group that took the drug completely eliminated the low blood sugar, which was good, but at the steep cost of pervasive hyperglycemia. The group which reduced their basal by 20% faired the best. They were able to eliminate many nighttime low blood sugars while staving off many of the high blood sugars.
With more research on this topic still to come, it's likely that we may find a solution to the nagging problem of night time lows.
The other session on athletics had a little less patient information, but was helpful nonetheless. It got into the nitty gritty of equations and technical data for eating before, during and after exercise (all of which went by far to fast to take down). There were, however, some facts that will help me immeasurably when I exercise. Spurts of high intensity exercise can actually raise your blood sugar instead of lowering it (i.e. sprinting or wrestling), where as continuous aerobic activity will lower it. Finally, it has been shown that if you are doing one block of aerobic activity followed by rest, and then another block of aerobic activity, your body will need more carbohydrates to maintain a stable blood sugar during and after the second block of activity.
Possibly the best fact from the whole session was the discovery of the best food to eat after exercise. Chocolate Milk! This is great! Who does not love chocolate milk? The answer is no one. Chocolate milk was proven to decrease time to exhaustion and also keep blood sugars stable (Now all of you know what I will be drinking after my daily five mile run). Finally, I can have something which tastes great and improves my performance, unlike those protein bars!
Until next time...
June 7, 2009
How many of you have had more than one life changing experience in a day? How about two in a day? How about three in two days? In the past two days I have had three life changing experiences. I've met the president of a global diabetes company, worked alongside one of America's finest medical correspondents Anita Manning and finally I had the incredible opportunity of participating in a real news conference. Not just attending and sitting in the shadows, but actually being a full fledged participant.
Today after the Banting lecture I took my press credentials and headed off to the ADA's news conference. Here, a select group of reporters from all over the world were invited to listen to the report of four researches and their study on whether it was better for people living with type 2 diabetes to take insulin-providing medications or to insulin-sensitizing medicine.
The study also took a look at whether or not early intervention on heart disease (i.e. atherosclerosis and bypass) was beneficial. The conclusion reached by the team was: trying to raise sensitivity to insulin led to less weight gain and more control over diabetes, and early intervention on heart disease reduced the occurrence of heart attacks and stroke.
During the presentation I got a little lost in all of the medical jargon, but I was able to understand enough of it to pose one question: "Was there any standardization of the type of insulin given to those who were put on insulin-providing medications?" The answer to my surprise was no. It was an interesting to me that in a study that wanted to study two specific things (diabetes control and heart disease severity) did not standardize the insulin. You can read the full press release about the news conference at http://professional.diabetes.org/Congress_Display.aspx?TYP=9&SID=239&CID=60976.
This was an amazing experience. I learned so much not just about diabetes, but also about how research is conducted and how news conferences work. It was fantastic.
Check back for more tomorrow!
June 7, 2009
What could be better then real Louisiana Cajun food? The answer is only one thing: the possibility of preventing all further cases of type 1 diabetes. This morning I attended the Banting lecture at Sci Sessions 2009 and it was absolutely mind-blowing. There were two speakers: Dr. Paul Robertson who is the President of Medicine and Science at the ADA, and Dr. George Eisenbarth who is the 2009 Banting award winner for lifetime achievement in the field of diabetes.
Dr. Robertson lectured mostly on the status of the ADA and their research grants and the need for mentoring. The ADA has announced that it will continue to fund new and continuing research even through this is a trying economic time. He continued his lecture by addressing the need for leadership and mentoring. He stressed to all 8,000 people in attendance during the session that with their leadership, we can find a cure for this disease and that the more people lead and mentor, the more others will take up the banner and fight for diabetes.
Now to the meat of the Banting lecture: the award winner for lifetime achievement in the field of Diabetes, Dr. George Eisenbarth. He discovered the link between type 1 diabetes and genetics. In essence, he discovered that type 1 diabetes is genetic. The most interesting part of the lecture was learning that type1 diabetes can be caused by different autoimmune disorders, instead of just one precipitous event which leads the immune system to go haywire. I never thought in a million years that diabetes had more then one cause. It was mind-blowing to me.
I just ran into Dr. John Buse, the immediate Past President of Medicine and Science for ADA (we met at the North Carolina Gala back in February). He said that Dr. Eisenbarth was his mentor when he was younger, and that "Dr. Eisenbarth has more good ideas before breakfast than some people have their whole lives." That is really impressive, and I am so grateful that I got to hear Dr. Eisenbarth speak. It was an honor. This lecture was so enlightening and intriguing. I could have listened to it a hundred times before getting bored.
There's still more to come!
June 6, 2009
Students with diabetes listen up! You have rights! You have the right to the same educational opportunities as those without diabetes.
I just had the privilege of attending a session on the American Diabetes Association's Safe at School Campaign. The session was led by both ADA staff and volunteers who head up Safe at School. Safe at School has been put in place to protect the youth of our country in school who have diabetes. It was started in 2004 because of issues of children with diabetes getting discriminated against at school (i.e. kids not allowed to take insulin, test blood, or have pumps because the teacher thought it was a pager.) Since its inception, it has grown and thrived to become the pre-eminent place for children who have been discriminated against and their families to get resource and support. Their primary goals are to ensure that all kids with diabetes are being educated in a medically safe environment and that they have access to the same educational opportunities as those without diabetes. This program gives hope to the thousands of children like me. I wish this program had been around when I was having trouble with my school.
One day, when I was in elementary school my blood sugar was really high around like 400 and I was really really thirsty. I asked my teacher if I could go get some water and she said no. I explained that I was dangerously high and I needed to drink water for my health. She still said no. I went home and explained what had happened to my parents and they were rightfully infuriated. They quickly called the school expressing their anger at the situation. They then called my pediatric endocrinologist to get a doctors order saying that whenever my blood sugar was high I needed to get a drink of water. Since then I have never had a problem, but I am one of the lucky ones.
I always knew I had the right to the same education as those without diabetes, but I never knew to what extent I was guaranteed this right by law. During this morning's session, I learned that people with diabetes are covered under the Americans with Disabilities Amendment Act and Section 504 of the Rehabilitation Act. Both of these laws ensure that those who have a disability (disability is defined as a condition that significantly impacts some part of your life) cannot be refused education. This might seem a little complicated, but if you are a kid with diabetes or a parent of a kid with diabetes, this is information you need to know!
We watched a short video during the session, and one of the parents in the video said that they would cry every time they had to drop their child off at school because they feared that they would never see them again due of the lack of care at the school. Parents and children alike, you are protected by the law, and the American Diabetes Association is here to help. They have solutions to your worst school problems. Part of their mission is to improve the lives of people with diabetes, and that includes people who are having trouble at school. They want to help. Give them a call 1-800-diabetes or visit the safe at school page, Safe at School.
There will be more later I promise. Until then!
June 5, 2009
What an event this is! I am at the 69th Scientific Sessions put on by the ADA. This is one of the biggest events I have ever seen. It is like the Super Bowl of Diabetes. I just landed after 4 hours of travel time and having to deplane because of feathers discovered in the engine. I am in the bustling city of New Orleans. The only thing I am really thinking about right now is that I really should have brought my trumpet. There is a jazz band playing (which I would love to be playing in) and leading us all to the reception for the kick off of the 69th Sci Sessions. I am really excited to learn about all of the new and exciting things that are happening in the world of diabetes research. Also, I love getting free pens! I will keep you all updated on all of the fascinating and really cool technology that is coming out for diabetes treatment. You all will be hearing from me soon.
June 3, 2009
Two more days until ADA's Scientific Sessions meeting! I am really excited to go to New Orleans. One of the first sessions I'm attending on Saturday is about ADA's Safe at School Campaign. This session will give doctors, nurses, and other health care professionals a lot of information about diabetes discrimination in schools, how families should deal with it, and how to prevent it from happening in the first place. I think this session is a really important part of the meeting.
I've blogged before about some of the challenges I've faced regarding diabetes in school, and I know a lot of other kids have faced the same problems, or even worse problems. I think that giving people information is probably the best way to prevent diabetes discrimination, and that's what this session will do. To learn more about ADA's Safe at School campaign, visit Safe at School.
I will post a new entry when I get to New Orleans on Friday!
May 29, 2009
So next Friday, I am hopping on a plane and heading to New Orleans for the ADA's 69th Annual Scientific Sessions meeting! I am so pumped! This meeting is a gathering of the best and the brightest when it comes to diabetes: scientists, doctors, nurses, and other health care professionals from around the world will be there. I am going to be blogging about my experiences there, as I attend sessions, tour the exhibit hall, and meet tons of people who are as committed to fighting diabetes as I am! Check back next week for blogs, photos, and videos about the meeting. Anita Manning, retired senior medical writer for USAToday, will also be blogging. You can view her blog here.
Can't wait for Friday!
May 15, 2009
Well, I'm done! Done with my Advanced Placement tests (AP for short). I took the AP Macroeconomics test and the AP Microeconomics test yesterday, and I had the AP Statistics test last week.
Each of these tests is three hours long with only one break. These tests provide a unique set of challenges for people with diabetes. I have to be aware of my blood sugar during the test because if it strays too far from normal I am put at a huge disadvantage compared to my peers.
There has been a time where I have had to retake a three-hour test because I was low during the entire test. One time my score was almost canceled because the proctor thought I was cheating because I was eating a snack. I have developed a routine that works for me when I have to take a standardized test. First, I get a ton of sleep (like 11 hours) so my body is not taxed by exhaustion during the test. Then, I eat a normal breakfast that I know the exact carb count for and I make sure it has at least a little bit of fat to keep my blood sugar at a steady level for the entire morning. I try to keep my blood sugar as normal as possible so I can be mentally sharp.
Standardized tests are hard, but they can be easily cracked!
Until next time...
April 27, 2009
So last week, I gave my speech at the Center for Disease Control's Division of Diabetes Translation annual conference on Diabetes. I was so happy with the way that it went! I got great reviews from the audience! I was a little worried about the time, because the people who spoke before me went over the time they were given. There was a silver lining to this though; I was able to test out my ability to edit my speech on the fly. I was a so worried about tripping up while editing it but I didn't (for the most part). The only real trouble I had was with the word "statistic". Who ever made that word so hard to pronounce in public was not a very good linguist. That's all I have for now.
Until Next Time
April 22, 2009
Today I am sitting in Long Beach, California waiting to give a presentation at the Center for Disease Control's annual conference on diabetes!! I am very excited but also very nervous because working for the CDC is my dream job. I really want to impress all of these people because I want to be able to work for them someday. This is my longest speech to date — about 20 minutes!! It is also probably my most important one! I am worried that in the middle of it I may get lost or lose my words. It gives me comfort though knowing that the people in the audience are rooting for me and want to see me succeed. Well, I'm off to give a speech.
PS - If you are ever giving a speech in front of numerous people, NEVER picture them in their underwear. It just makes you feel really awkward.
April 17, 2009
Last week, I visited Pepin Elementary in Lake Pepin, WI. I was invited by a third-grade student who has diabetes and his family to talk about the disease. It was a lot of fun, beforehand I didn't quite know what to expect.
When I arrived I was told that I was going to be speaking first to the kindergarten through third graders then to the fourth through sixth graders. I had my speech all prepared and ready, but as I started my first presentation, I realized that my material might be too complicated for the younger kids I was speaking to. I immediately had to scrap my speech and start speaking extemporaneously. Having never spoken off the top of my head before, I was quite nervous. I started slowly and as I got my rhythm, I was able to speed up and to keep the kids engaged. It went surprisingly well for my first speech off the top of my head.
I love speaking to kids about diabetes because it gives me a chance to stop the growth of all the horrible myths about diabetes like "you get type 1 from being fat" or that "you can never eat sugar". Education is the most crucial part of diabetes care in my eyes. If people don't know what diabetes is, how can they be expected to help you fight it?
April 6, 2009
Sorry I have not written in a while but I have been off gallivanting with my friends in Arizona. It was really really fun to be able to be with my friends in Arizona without my parents, but it presented a particularly difficult set of circumstances for me.
First, I had to be extra careful in my management because I knew I did not have my parents around to check my blood sugar in the middle of the night. It was also a completely different routine from the one I had at home. I was getting up and immediately leaving the house we were staying to go sight-seeing. Out of necessity, I came up with a plan that allowed me to do all of these things while still staying in control. I checked my blood sugar every two hours during the day, sometimes more so I could see how my blood sugar was trending. My incessant checking was very noticeable on my blood sugars. They were perfect almost the entire trip (with the exception of a dislodged infusion set).
I hope everyone is having a great spring. Get out and enjoy the warmer weather!
March 18, 2009
What a week! On Monday and Tuesday, I went to Capitol Hill to advocate for increased funding for diabetes research, prevention and care. It was one of the most rewarding things I have ever done. To meet with the men and women who write the laws of our country and to have them listen to me, an 18-year-old high-schooler, was so moving.
An interesting thing happened when I met with Congressman Keith Ellison. He was not there when we had our meeting, but I decided that I would head back after all of my other meetings and see if I could get a picture with him. He was there and I was even able to have a ten minute conversation with him! Not only that, he even offered me an internship with him at his district office in Minneapolis. I can honestly say that I do not think the day could have gone any better.
Now, I am heading to Arizona for the rest of the week (it's Spring break!) to hang out with my friends. I'll write more when I get back!
Until next time, keep on fighting!
March 16, 2009
I am sitting here at the ADA's National office in Alexandria, VA waiting to go up on Capitol Hill. I am a little intimidated by all of the representatives and senators that I am going to be meeting. It is a little nerve racking preparing to meet the people who decide the fate of our country. The meetings are to request more funding for diabetes research and prevention.
I know that the benefits for people with diabetes will be astronomical with increased funding for both the National Institutes of Health (NIH) and the Center for Disease Control and Prevention's (CDC) Division of Diabetes Translation. Even if the millions of dollars invested in diabetes research yields just one new way of management, that one new treatment will make the lives of people with diabetes just that much easier. Anything that can be done to make this disease easier to manage should be done without hesitation because nearly 24 million Americans live with this disease and they are waiting for us to speak up and be their voice.
March 6, 2009
Safe at School...that's what all kids with diabetes want to be. They want to get the same education as those who do not have to check their blood sugar five times a day. They want to go on their third grade field trip to the zoo instead of having to sit in the principal's office. While they all want these things, it is our responsibility for it to be their right.
Recently, I was in Raleigh, North Carolina at their annual ADA Unmasking a Cure Gala. I had the privilege of meeting with many people who are working on ADA's Safe at School campaign. I met the people who are spearheading this agenda and bringing it to our communities and elected officials.
I wish there had been an initiative like this when I was in grade school. I have been pretty lucky. I have not had to deal with much flak for living with diabetes: my teachers backed me up and the school administration was very supportive. But I have had my run-ins with a few school nurses and the occasional scared teacher. I would just like to extend my thanks to the American Diabetes Association for helping kids like me stay safe at school. To learn more about ADA's Safe at School Campaign, visit Safe at School.
For teens with diabetes, figuring out how to manage your disease and dating can be a big task. Everyone wonders what kind of role it should play in a relationship and how it affects relationships. The only answer I can give is that it varies from relationship to relationship. I find that some of the girlfriends I have had were completely freaked out about it and were always worrying about me. I had to do everything in my power to get them to calm down and not worry. I reassured them I knew how to handle my disease, I was in good control and that my A1Cs were good.
Other girls understand that it's serious, but know that I am in good control. They just look out for me rather than worry about me. I find that diabetes plays the biggest part in the relationship with the girl's parents rather than with the girl herself. The parents always ask me questions about what I am doing to manage my diabetes; why I am doing it, and how do I know what to do, etc. After a while it becomes a non-issue.
My advice is to be proactive in managing your diabetes when you are out on a date. You may need to check your blood sugar more often. Sometimes it's hard to tell if you are nervous or low. Feel free to excuse yourself and go to the bathroom to check your blood sugar. I check my blood sugar in front of my friends or dates. I'm not self-conscious about it. It's better to check often than to say something stupid. Remember, this is someone you are trying to impress!
Dating can be stressful for anyone, not just people with diabetes. For me, dating makes my blood sugar take a nose dive. I call it "pretty girl syndrome." I need less insulin when I'm around a beautiful girl. Sometimes I set an alarm to remind myself to give myself insulin, in case I'm distracted and forget. Dating will affect every person differently. Remember to pay attention to your body.
Talking to my date's father always makes my blood sugar drop too. You really want to be on top of your game when you meet your date's parents. Check your blood sugar BEFORE you go up to the door. I always try to go into a date a little high and I always carry snacks with me.
One final note about dating: if you are relaxed and calm about your diabetes, your date will be too!
February 17, 2009
I get questions about how I manage diabetes in social situations and how my friends deal with it. If you are comfortable and relaxed with your disease, then everyone around you will be too. If you're cool with it, they are too.
I remember one time I was giving myself a shot in the stomach and two of my friends, a guy and a girl, came up and started asking me questions about what I was doing. The guy said, "What are you doing", and I responded by saying that I was giving myself a shot. He responded with "cool" and walked off.
The girl asked me a litany of questions about how I knew how much to give and how I knew what to eat, etc. I responded to each of her questions, but never gave her more information than she wanted to know. I think this is important, when kids are asking casual questions—answer their questions in a casual manner—never go beyond their questions.
Sometimes if you give too much information it becomes a burden and they worry. Lately, the most asked questions are: "does you pump have games on it?" "Can I have some food?" and "Is it hard not eating sugar?" I find that they are not really intrigued by how I manage it; just that I manage it and that I'm not going to die while they are around. When I think about it, kids seem to be more concerned that they might be burdened by taking care of me—and if I let them know I have it under control, everything is cool.
Parents seem to be more fearful. Kids are curious, but parents worry. When I would go to a party, my Mom would always call the parents a head of time and find out what their plans were and what types of food they were eating, etc. She would let them know I had diabetes, but that I was in good control and was responsible and knew how to manage everything on my own.
She told them they could trust me with making good decisions and could call her if they had questions. I always brought along my own diet soda and extra snacks in case I needed them. I also had a cell phone and if I didn't know how much insulin to take, or if my blood sugars were being erratic, I would call her and we would figure out a plan together.
My Mom was cool and calm about it when she called the parents. My parents and I always had a game plan before these types of parties or sleep overs. When I was younger, sometimes I would get picked up at midnight and not stay overnight.
Living with diabetes forges stronger friendships. My close friends look out for me in ways that normal friends don't. They help me find food if I'm low and they know when I am going low, sometimes even before I do. They know all about my disease, but I only explained about it when they asked or if they really needed to know. I never forcibly explain to anyone about my disease. If they want to know about it they can ask me.
For me, the most important thing is to stay cool and relax when I am telling people about my diabetes. If I don't feel awkward, they won't either.
February 5, 2009
Recently, I had the interesting pleasure of being part of a small town wedding. I arrived at the rehearsal dinner at 6 o'clock and was told we were not going to be eating until around 8:30. This put me in a bad situation. I had eaten lunch 7 hours earlier and my body was telling me (via blood sugars) that I needed a meal. So I came up with what I thought was a particularly interesting solution. I set a temporary basal rate, cutting my normal basal by 75%. I then ate high about 50 carbs worth of food.
I managed to keep my blood sugar in check until dinner. But the dinner was fried food! Everything was loaded with fat and had almost no carbs. I could not give myself too much insulin or I would crash, but then eventually rise because of the fat. I had no idea what to do. I decided to give all my insulin over time: 10 units over three hours. It worked. I was able to keep my blood sugar in check until the rehearsal ended and I could go back to the hotel and stabilize it with food I knew how to count.
I have a set schedule that I follow everyday, and when it changes it is sometimes hard for me to deal with. However, when I am thrown into an unknown situation with weird foods and different eating times, I try to find foods that I know the exact count for and eat those (even if they may be completely uninteresting). That way at least I know how my body is going to react to the food even though it may react differently to the change of schedule. I do this so I can at least control one of the variables in diabetes management.
February 4, 2009
Hey everyone, I wanted to let you know that there is now a National Youth Advocate Fan page on Facebook! To check it out, click here!
January 23, 2009
For me, having diabetes causes me to reflect on my life more than most teenagers. I think a lot about the obstacles and the opportunities I have because of diabetes. I think that sharing my diabetes story helps both me, and other teens who are going through the same thing…
At the age of fifteen months, I was diagnosed with type 1 diabetes. I have faced the serious consequences and complications of diabetes. Every morsel of food that goes into my mouth is counted meticulously. I have to live with the fact that every food choice I make right now can affect me twenty years down the road with heart disease, kidney failure, blindness, and amputation. I must always be aware of my surroundings so I can find food if I'm low, or help if I need it.
My entire life I have lived with many rules and restrictions. As a kid I couldn't always eat the foods that I wanted. I had to make unpopular decisions, too; like staying at home when all my friends got to go out to eat because my blood sugar was too high, or not going to an overnight party because of blood sugar instability. I've had to forfeit wrestling matches and pull myself out of football games on strategic plays. These decisions were difficult to make and people didn't always understand. I hated disappointing my coaches and teammates. However, these circumstances have ultimately strengthened my character and my resolve to keep moving forward. I'm proud of my ability to overcome obstacles and make difficult decisions in the face of peer pressure.
I have been stared at for testing my blood sugar and taking shots. I have been called a weirdo, goon, and unnatural. I was called a "freak show" at a biotechnology camp. All of these words cut immeasurably deep, but I neither let these words define me nor do I buckle under their pressure.
I used to consider diabetes a curse; an unbearable burden that I had to carry. That's before I started taking a look at what I had gained from my experiences rather than what I had lost. This realization came my sophomore year. I was fed up with my diabetes. I had been having unexplainable blood sugars and I was unable to control them. At one point, I took off my (life giving) insulin pump and threw it against the wall and said "I'm done," and walked away. A few hours into my breakdown, the proverbial "light bulb" went on. I was letting the disease dominate me. At that point, I resolved to never let it get the best of me again.
I'm blessed by my disease not because of the disease itself but because my accomplishments mean more to me because of having to overcome insurmountable odds. During one wrestling match my blood sugar was really low and I couldn't give up any more points. I held on to win even though I was at a huge disadvantage. It was like winning a championship!
Diabetes is many things; a disease, a curse, a burden. But above all, it is a gift. It has given me perspective, a tougher skin and hardened my resolve. But most of all, I am blessed with a love of life and excitement for the future.
January 16, 2009
Being a teenager, I get copious amounts of questions on how I deal with diabetes and driving. I have very strict guidelines, which I follow before I drive and while I drive. These are the steps that I take which work really well for me. (You should talk to your parents and your doctors to figure out what works best for you.)
- Check blood sugar 30 minutes before driving to get my blood sugar trends.
- Check immediately before driving and, depending on my trend or blood sugar, treat accordingly.
- Have at least four snacks that are easily available in the car.
- Have a meter in the glove compartment always. I have a dedicated meter for my car.
This is my checklist, which I go through every time before I drive. Then I have some guidelines, which I use during my drives. I always make sure I know of a place where I can pull off in case of emergency or if I need to check my self or need to correct. I know that driving while low is dangerous, so I do everything I can to prevent it.
For shorter trips, (between 1-5 miles) I try to use my bike because it is much healthier and keeps my blood sugar in check.
To be completely honest I do not really like driving especially when I have to drive with my parents. My mom is always trying to slam on the imaginary break even though I'm only going 15 mph on a deserted street! I know that driving is very large responsibility and that it's much larger when it comes to having diabetes.
January 1, 2009
Hello my name is Chris Stokes and I am so happy to be the ADA's National Youth Advocate for 2009. I am so excited it almost makes me warm in the bitter cold of Minnesota.
I was diagnosed with Type 1 Diabetes when I was 15 months old. I have lived through many radical changes in diabetes care and have seen the giant steps we have taken in the pursuit of the cure. While I do not know what it is like to live without diabetes I have had to deal with every piece of diabetes-related adversity. From cranky nurses to volatile coaches, to taking standardized tests low and even being hospitalized. I have lived through it all.
I am an athlete. I love to train my body to its highest level of fitness. I am a wrestler, football and ultimate Frisbee player. I have wrestled varsity since eighth grade and played varsity football since tenth grade. I love anything sports-related.
I am very active in everything music. I am a trumpet player and I play in several different ensembles including the Minnesota Youth Jazz Band and the Minnehaha Symphonic Winds.
I am very excited to be the National Youth Advocate and to begin to get my message out there. I want people to know that while diabetes is a hard and even deadly disease, you do not have to let it stop you from doing what you want to do.
I want to help children at school who must fight unnecessary adversity to simply get the same education as those without diabetes.
I want everyone with diabetes to know that I am here. I hear your voices. I want a cure for this disease. If anyone has any questions or possible blog topics for me feel free to email me at email@example.com.
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