type 1 diabetes

Diabetes patient tips sponsored by JDRF

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Yesterday I listened to a number of people with type 1 diabetes share their personal tips for managing their diabetes. Above was the last tip recommended, to watch this video from Dr. Steven Edelman, founder ofTCOYD on “diabetes and drinking.” So while writing this, I did. You should too and have a laugh before we go on to more serious stuff. 

The Patient Tips session was part of JDRF’s ONE Expo. A fairly new outreach program trying to bring – education, engagement and empowerment – to the type 1 community in New York City. JDRF is the largest charitable supporter of type 1 diabetes research.

The session was led by Zoe Heineman, who has started her own Ha!(Hypoglycemia Awareness) movement and is training first responders to recognize low blood sugar. 

Here are some of the ‘Tips & Tricks for Daily Type 1 Management’ that were shared by the group including patients, a mom, a sibling and professional athlete:

• Train everyone around you what to do in case of emergency like for instance where you keep your insulin, glucose tabs.

• Give yourself a break. One blood sugar number does not make an A1C.

• A woman who’s had diabetes 53 years shared that she’s always had high A1Cs until she went on a low-fat, high-carb regimen that brought her A1C down from 8% to 6.5%.

• If you’re in school explain diabetes to your teachers and classmates. And tell your friends. They won’t treat you any differently and you’ll feel safer. 

• This loving sister shared that she’s not annoyed to wait for dinner if her brother’s blood sugar is high and she’s more than happy to do speed walking down hotel corridors with him.

• This mom shared how important it is to accept the diagnosis. A family can’t create a positive nurturing environment until you do. 

• If you have an office job, keep your desk as well stocked as a drugstore – with pump and test supplies and reserves of quick acting sugar.

• Diabetes doesn’t define you, it’s something you have. It needn’t stop you from doing almost anything.

• Diabetes is an art, not a science. You can’t always figure it out. You can’t be perfect at this. Try things out and don’t be defeated. It’s all learning. 

• Use exercise to help maintain your blood sugar. No one ever felt worse after exercising – it helps keep weight off, feels good to move your body, have fun and make it social.

• Check your blood sugar, don’t guess. 95 mg/dl may feel different today than it did yesterday. 

• When traveling, keep some supplies on you and some in checked luggage so if you lose some you have back up.

• HelpAround is a community of type 1s. You can register and always find someone nearby who can assist you if you need insulin or a question answered. 

• If you’re drinking, check your blood sugar frequently and make sure your friends know you have diabetes.

• Don’t have your life revolve around your diabetes.

All good ideas. If I add my two cents I’d tell you to appreciate all the work you do managing your diabetes and find one positive thing diabetes has given you and remember it when you feel overwhelmed.

KIDDs, perhaps the truly unseen group impacted by diabetes

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Last Saturday I spoke at the launch of Marjorie’s Fund in New York City. Marjorie’s Fund is a non-profit organization founded by endocrinologist,Jason Baker, a person himself with type 1 diabetes, and just featured in Diabetes Forecast as “People to Know in 2013.” And deservedly so. 

Until now Marjorie’s Fund has dedicated its energies to empowering youth and adults with type 1 diabetes in Africa by providing resources, education and supporting relevant research. Marjorie’s Fund was actually named after a young woman Dr. Baker met in Uganda, who hard as she tried, given the lack of resources, died at 29 from kidney failure, a consequence of her type 1 diabetes. 

The three hour event gathered about 75 people with type 1 diabetes and their loved ones – parents, spouses and friends – at Chelsea Piers in Manhattan. The event had a triple purpose: to help introduce PWDs (people with diabetes) to local resources, create community and celebrate those we hold dear who support us each day.

Yet, in that list of supporters, I left out a significant source of support – our children. And, I hadn’t really thought about it until 16-year old Hannah approached me and introduced herself and her dad who has had type 1 diabetes for 41 years. Same amount of time as me.

I was truly moved by the loving relationship between Hannah and her father and realized, not having children myself, that children who have parents with diabetes, particularly type 1, are both a source of support and impacted by their parents’ diabetes. It must be frightening to see your parent exhibit any of the symptoms of low blood sugar or at times heart-wrenching to see them check their blood sugar multiple times a day, every day.

Wanting to help other young people whose parents have diabetes, Hannah created the website KIDDs, Kids of Insulin Dependent Diabetics. It culls resources, basic information and gives you, if you are the child of a parent with diabetes, a place to be with others who share your experience.

As we parted, Hannah’s father and I agreed that we’re going for our 50 years with diabetes Joslin medal. I’m hoping Hannah will join us at the celebration dinner. Who knows? Maybe by then she’ll have kids of her own!

“Sugar Babies” film shows wrenching rise in childhood diabetes, and needs funding

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Even after living with type 1 diabetes 40 years, tears sprung to my eyes watching the trailer of “Sugar Babies”, the rising epidemic of diabetes in children. Two and three year olds taking shots and pricking their fingers constantly like 4-year old Caidence above. Ten year olds with type 2 diabetes largely because we’re larger. 

Jenny Mackenzie, mother of a type 1 daughter, and award-winning filmmaker is trying to raise $30,000 to finish her eye-opening film on childhood diabetes. Whether you contribute any money or not, a dollar or ten or nothing, watch, you will be moved. You will remember when children live this way what it really is to be, and to have, a child with diabetes.

Isn’t it time that people really understood what it’s like to live with diabetes, and we make it known?

Type 1 vs type 2 diabetes debate continues

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Which is worse t1 or t2? Keeping another myth alive.

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Wow, I am late to this discussion, but felt it worthwhile to join because it appears the debate continues…

Last month Diabetes Health published “What People with Type 1 Diabetes can Learn from Type 2s” by Clay Wirestone  It set off a firestorm of comments, mostly from type 1s, about how dare you tell us we can learn something from those lazy, fat type 2s!

David Spero, blogger over at Diabetes Self Management then wrote this post, “Type 1s Vs. Type 2s?” calling for type 1s and type 2s to come together for the sake of our health and that both sides are not fully aware of what the other side lives with. Interestingly, the comments posted on Spero’s site were almost unanimously empathetic.

It seems to me, Wirestone’s biggest goof was his argument (that t1s can learn from t2s) and his tone. If he’d approached the topic from the point of view that t1s and t2s share some commonalities and we can each learn something from each other, the war may have never ensued. But it is a fascinating study in how we all emotionally hold diabetes.

You should go read the stories and comments to both stories. In reading all the comments to Wirestone’s post, I found Allison Blass nailed it for me:

“The problem with this article isn’t so much that it’s saying people with type 1 can learn something from type 2, but assuming that people with type 1 aren’t already learning these lessons for themselves. Plenty of PWDs with type 1 exercise regularly, take their medication faithfully, and make small changes to get healthy. These aren’t genius concepts divined by the type 2 community. 



I will say that the amount of misinformation and misconceptions about type 2 diabetes in the comments are disgusting. Type 2 diabetes is not CAUSED by obesity – it’s a contributing factor. Type 2 is not cured through diet and exercise – it is managed, just like insulin. Type 2 diabetes does not have the same flexibility as type 1 – blood sugars have to be dropped through extra exercise or changes in diet, not just a simple bolus. People with type 2 diabetes can go years without being diagnosed, which means that many people with type 2 are diagnosed at the same time they find out they have complications. 



Type 2 diabetes is a bitch, same as type 1 diabetes. And yes, they are different. But we both have to do things that are different, we both have a health issues and learning tactics and strategies for handling certain situations could help. 



In any event, if you don’t like people spreading misconceptions about your disease, you should probably be damn sure you’re not spreading misinformation about someone else’s. It’s not nice.” 



-Allison Blass 
www.lemonade-life.com

And then, as I said, even tho I came late to the game, I felt compelled to add my own 2 cents worth and so I posted this today on Spero’s blog:

“As a type 1 for 38 years I understand the cry of type 1s that no one understands how hard and intense it is to live with this disease, and that we are grouped under the same umbrella of those lazy, fat type 2s who did it to themselves.

Yes, many type 2s engaged in poor health habits that may have led to their diagnosis, but not all. One in five are slim actually. For some the genetic component is so strong they would have gotten it regardless of their actions. And there must certainly be type 2s who are annoyed with the bad press their own brothers and sisters bring them.

But one diabetes being worse than the other? It’s all a matter of perspective. I wrote a book recently, “50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It”  and the myth I always quote is, “Type 2 diabetes is not as serious as type 1.”

It is one of my favorites, because the emotion runs so high and because the answer seems so obvious, but is not. Both are extremely serious because they can both lead to the same devastating complications. While type 1s will never get off their insulin, and endure more intense management, type 2s are asked to undertake preventive behavior, which anyone can tell you, is a bitch.

Since most type 2s are diagnosed years after they have the illness, many already have complications by time they’re diagnosed. And while most type 1s will live with their illness longer than type 2s, many will also live more healthfully with it because they developed healthy habits earlier and they see more directly the positive result of healthy habits.

When “What People with Type 1 Diabetes Can Learn from Type 2s,” appeared on Diabetes Health what incensed most readers was the cavalier notion that type 1s aren’t doing good enough, so obviously we could learn a thing or two from type 2s. That reeks of presumption and offends.

We all have something of value to share from our experiences, and it’s up to us as individuals how we manage our diabetes. And, how we choose to see it – some see themselves as victims and only see hardship, others see diabetes as a welcome wake-up call and get healthier, and others see diabetes as a signal that life is precious and go about making the most of it.

Since no one can argue with your experience, it’s foolish to throw rocks at someone else’s. And while personally, I would vote to change the names of type 1 and type 2 diabetes to better reflect the differences and educate the general public about the differences, when it comes to helping each other out, let’s not overlook that living with any chronic disease we share many similarities.”

What’s your take on this?