Wednesday, 29 June 2011

“Do you know a child or young person with Diabetes?”

If you do Diabetes Action needs your help. Please read on to find out why and how.

Most children and adolescents with diabetes have Type 1 Diabetes. This is an autoimmune disease, which means that for no apparent reason a child’s immune system decided to turn on it and destroy a crucial part of the body. In the case of Type 1 diabetes the immune system attacked the cells that make insulin. Insulin is needed to convert the food we eat into the energy we need to exist. The food, in particular the carbohydrate, we eat is converted into glucose and if the glucose isn’t converted into energy it poisons the body and eventually causes all sorts of organ failure and if untreated death.

Children and young people with Type 1 Diabetes must take insulin in the form of multiple daily injections and must test their blood glucose at least 4 times a day. They must attend outpatient clinics 4 – 5 times a year to monitor their diabetes. These children do attend their hospital appointments regionally however due to lack of resources to offer new treatments that control blood sugar and insulin levels about 50% are referred to the Paediatric Diabetes centres in Dublin, where services are inundated with referrals from children and adolescents with diabetes from the rest of Ireland.

To tackle this Diabetes Action is seeking the reorganisation of existing paediatric diabetes services so that up to date specialist care can be provided equally. The cost of this reorganisation is €750,000 but international studies have shown that improved control of diabetes in children and adolescents can lessen the development of costly complication in adulthood by as much at 76%.

“At present 50% of children and adolescents with diabetes develop some form of long term diabetes complication by the time they are adults. We can dramatically improve health outcomes and quality of life with a very modest investment and a reorganisation of services” says Prof. Hillary Hoey, leading paediatric endocrinologist.

Diabetes Action is asking all people with diabetes to log onto their website and support this campaign for better services for children and young people with diabetes by sending an email to their local TD’s and senators to make representations to the HSE and to the Minister for Health seeking a reorganisation of services.

Diabetes Action asks that if you want to support this campaign but do not have access to the internet that you ask a family member or friend for help or visit the local library.

As of 17th June 2011, 1,200 people have used the advocacy web-site to send over e-mail representations to TDs and Senators in the Oireachtas.

Children and adolescents with diabetes deserve services which will support them to lead a normal and productive life and without future ill health.

Log onto now!!!

Tuesday, 21 June 2011

Type 1 vs Type 2

There is so much confusion out there in the non-diabetes community about diabetes and we (the people with diabetes) are often subjected to comments such as; “Diabetes; doesn’t that mean you can’t have any sugar?” or “Type 1 – which one is that?”

These comments don’t bother me all that much when it’s face to face because I can take the time to explain what Type 1 Diabetes is. But when comments like that come from people who in my opinion should know better, then, I lose it and have to be quarantined before I can be with people again.

For instance, I sent an email to a public representative highlighting a campaign to get better health services for Type 1 diabetes. In my email any time I used the word “diabetes” it was accompanied by Type 1. However, the reply talked only about Type 2 diabetes and what a “scourge” it was, requiring me to send another email to said TD.

In the same week, I had to fill out one of those forms for mortgage protection insurance. You know the out-dated form that asks ridiculous questions such as “How often do you test your blood or urine for sugar?” What? “Is sugar present, often, occasionally or never?” Double what!!! Sugar is always present in blood. Who in-the-name-of-God tests their urine for sugar anymore? I mean it is useless information in today’s world. Yes, before 1985 when there were no Blood Glucose monitors we tested urine for sugar!

Please give sample readings for the last three months (with a small box for the answer). All of my readings would take about three pages for the last three months.

COME ON!!!!!!!!!!!!!!!!!!!!!!!!! One step forward and two steps back.

Is it any wonder that I feel like we are losing the fight to educate people about diabetes and make people more aware of it; never mind that there are two types and what those types are? How will we get people to support us in our quest for better health care services if they don’t even know what diabetes is? Things need to change – I just don’t know what to do to change them!

Wednesday, 15 June 2011

The more you know about diabetes; the better equipped you are to manage it?

The more we know about diabetes; the better equipped we are to manage it well. New treatments are being introduced all of the time on how to improve our diabetes control.

Diabetes is a disease for life and it changes as we go through our different life cycles. Therefore, Type 1 Diabetes is lifelong learning – we should always be on the lookout for more information.

Those of us who have been around the Diabetes life for more than 10 years will remember switching from the twice daily injections to the multiple daily injections (MDI) and how the way we managed diabetes  changed (and our way of thinking about it) but some of us fell through the cracks and weren’t informed that with MDI we could be more flexible with the timing of our meals and snacks or that if our blood sugars were high we could take and extra shot. So staying on top of the newest information should be a priority for people with type 1 Diabetes, we don’t have to follow it but at least know about it.

So Type 1 Diabetes Education in Ireland; what’s out there?

Initially, our Type 1 Diabetes education starts with the Diabetes Nurse Specialist, and we usually see her/him at our clinic appointments or when we have been admitted to hospital at diagnosis. Most of our information about managing Type 1 Diabetes in the real world comes from this person. We might also receive some Type 1 Diabetes education from a specialist dietician and maybe we have taken home some brochures and booklets to read in our own time. These booklets are usually very general and don’t provide enough information once you have absorbed the basics.

Presently, there is one structured education programme for Adults with Type 1 Diabetes called DAFNE (Dose Adjustment for Normal Eating). “DAFNE is a way of managing Type 1 diabetes and provides people with the skills necessary to estimate the carbohydrate in each meal and to inject the right dose of insulin.”

There are 6 centres in the republic of Ireland who provide DAFNE and you have to be a patient in the Diabetes out-patient clinic of that centre to access DAFNE.

So, where do the rest of us go to get that important knowledge about Type 1 Diabetes from?

Well most of the people I meet go to the internet and spend a lot of time going through different websites. Some look for books on Type 1 diabetes, of which there are many. Some look to people who are in the same boat and want to have person to person contact – this is available if you live in an area that has a support group available (Ennis, Co. Clare would be one of those places, so to would Cork City, and Dublin and more). Most of these groups are organised by volunteers and the Diabetes Federation of Ireland would have contact details for these.

Maybe others listen to advice from people who do not have diabetes or maybe find magazines with good information?

Where do you go to stay informed? Or do you think that it’s not that important to try and find other sources of information for Type 1 Diabetes?

I would love to have you post comments about this and hear other people’s opinions.


Log on to today!

Tuesday, 7 June 2011

When things get out of control how do you get it back?

There are loooaaads of articles online with tips for better blood glucose control or how to “take control of your diabetes”.
However, this one I came across on was very well written and should be easy to adapt into your own life. The purple text marks some of the original text that I have edited to make it more relevant for Irish people and the text that is highlighted are pieces that I feel are important to consider when you are trying to regain control of your diabetes but that is also a matter of personal opinion.

Eight Tips for Super Blood Sugar Control

By Clay Wirestone (with some editing by Gráinne Flynn)
May 20, 2011

You're heard the doctors. You've read the articles. You know all about tight control.

Ever since the results from the Diabetes Control and Complications Trial were published in 1993, everyone has known that reducing A1C levels staves off complications and keeps us healthy longer. We know this. And we've listened.

But many type 1s--and even type 2s who aggressively manage their illness--suspect that they could do better. And just a bit of searching around the web or browsing in your local bookstore will prove you right.

For me, it was the work of Dr. Richard Bernstein. "Diabetics are entitled to the same, normal blood sugars that nondiabetics enjoy," Bernstein wrote in the preface to his book Dr. Bernstein's Diabetes Solution. He's stated that viewpoint repeatedly in interviews and articles.

And who could argue with it? Some disagree with Bernstein's advice on how to get that level of control--an extremely low-carb diet figures into his plan--but his basic notion tantalizes. Are normal blood sugars possible? Can people with diabetes transform good blood sugar control into great blood sugar control?

I think we can. (Is feidir linn!!) And what's more, it's not that complicated. However, it does require that you, the person with diabetes, make a commitment to yourself to take action. Here are eight suggestions.

Have a goal.

The American Diabetes Association says that people with diabetes should aim for an A1C--a three-month average blood glucose level--below 7%. (From the 1st July 2011, the HbA1c will be measured in units called mmol/mol (pronounced “millimoles per mole”), rather than as a %. The HbA1c target of 7% will equate to 53 mmol/mol.) The American Association of Clinical Endocrinologists advises an A1C of 6.5% (45 mmol) or under. Most doctors would be pleased with either number.

But what's your goal? If your A1C is 8% or 9%, hitting 7% is a worthwhile aim. However, if you've managed to achieve an A1C near 7%, perhaps you could try for a lower number. Talk to your doctor and diabetes educator and see if they think you can safely aim for even tighter control.

Whatever you're aiming for, having that target number in mind will help. That's where you want to go. That's what you want to do. And that goal will help motivate you in the days and weeks ahead.

A note of warning: Don't aim for the impossible right away. If your A1C is quite high, don't immediately try for the lowest possible number. Talk to your doctor and set a reasonable goal. Then meet it. Then set another goal.

Check your blood sugar. A lot.

No piece of advice could be more obvious, but it's easily overlooked in the hustle and bustle of daily life. If you don't know what your blood sugar is, you can't hope to keep it at a nondiabetic level.

According to the National Institutes of Health, which funded the Diabetes Control and Complications Trial, it was once standard practice to check blood sugar a single time each day. That landmark study raised the standard to four.

But four checks a day, while better than one, can miss a lot. If you want tighter control, try six or eight checks a day. That's right: Take your blood sugar every two or three hours when you're awake, and definitely check overnight. You might be surprised to learn where your numbers go.

This can be a costly prospect for some people. You can only do what you can afford. But almost everyone can try the extra checks for a few days or a couple of weeks, and that information alone will be helpful. You'll learn how your body reacts to different kinds of food. You'll find out how long it takes your body to absorb insulin.

This is your baseline information. This is the stuff you have to know. The best technology and the most extensive education don't make the slightest bit of difference if you don't know what your blood sugars are most times of the day.

You also might want to consider a continuous glucose monitor. This device gives you a constantly updated blood glucose trend line and can alert you if your numbers rise too high or fall too low.

Carry glucose tablets. Everywhere.

Lows are a real challenge when trying to maintain near-normal blood sugars for any considerable length of time. Think about it this way: A problematic low of 2.5 is just 2.7mmols away from a great blood sugar of 5mmols. But it's 10mmols away from the high blood sugar of 13mmols. If you hate the way low blood sugars make your feel, it might seem more comfortable to stay in the high range. But that high range increases your risk of serious diabetic complications.

Glucose tablets can help solve this vexing problem. Have a low blood sugar? Pop three of four of them, wait a couple of minutes, and be on your way. Have them available at all times, in all the places that you might need them--at home, in the car, and at work.

The government's Centers for Disease Control and Prevention puts it simply: "Always carry some type of carbohydrate sugar food or drink with you." The CDC also advises wearing a medical alert bracelet and carrying a card in your wallet saying that you have diabetes.

For years, I didn't believe in glucose tablets. Why not use candy, I wondered. Or juice? They were both so much tastier than the tablets. But that's the problem. Who eats just three pieces of candy? Who drinks just a few ounces of OJ? It's too easy to over-correct and send your blood sugar sky high.

Stick with glucose tablets. They're tasty enough to be palatable, but bland enough that you won't be tempted to sneak one when your stomach rumbles.

Get coaching. Now.

Find a diabetes educator (diabetes nurse specialist or dietician) or nutritionist. Go to his or her office and learn.

Perhaps you've had diabetes for a long time and think you know everything you need to know. Perhaps you don't want someone in his 20s or 30s telling you how to manage your disease. Perhaps you think you get along just fine on your own.

If you think any of these things, you really do need to see the educator. Because it's easy for veteran patients to lie to themselves--to say that certain high blood sugars "don't count" or that they're not responsible when bad things happen.

An educator sees right through that. He or she won't discipline you, exactly, but you will need to talk openly and honestly about your disease and how it's going. And your educator will then arm you with knowledge and advice.

Boston's Joslin Diabetes Center actually recommends that people with diabetes go through the education process every year or two, making sure they keep up to date with the latest research and their own goals.

You will leave motivated and ready to look at your disease in a different way. And for those looking to take control to the next level, this motivation is invaluable.

For people more recently diagnosed, educators serve a different role. They can help you understand how the disease works and smooth out your ups and downs. Getting good advice at the start can keep you from making mistakes later.

If you have access to courses like DAFNE or BERGER which are provided by some diabetes clinics then avail of them.

Consider a medical device.

I've already touched on continuous glucose monitors. But it's also important to talk about insulin pumps. Both of these devices can remake your routine for the better. A consistent flow of fast-acting insulin from a pump can more accurately reflect the way a pancreas works. And the constant monitoring available from a CGM gives you nearly real-time feedback.

Neither device works miracles on its own. Nothing about the devices changes the basic nature of diabetes or the challenges of controlling the disease. People on insulin pumps can have poor control. So can people with CGMs.

But the education provided with the devices can be invaluable. And the mere act of closely looking after the disease pays off. It's important to commit to the treatment, learn all you can about it, and give it a chance.

Diabetes educators and medical device companies can be great sources of information if you're considering taking this step. Don't hesitate to ask them for advice and information.

In Ireland, both of these devices can be difficult to get but not impossible. If you are interested in giving the insulin pump or the CGM a try, find someone in your area who already has them for tips on how you get one too. There are 4-5 Type 1 supports groups established in Ireland, where you can find out more about pumps and CGM’s.

Don't just count carbs. Limit them.

Not all experts will agree with this point, but it's one that has worked for me.

The standard for diabetic treatment these days is counting carbohydrates in food. That is, your insulin shot should cover the amount of sugar in your food (most starches, like those in bread, break down into sugar). What that means is that you can eat most meats, cheeses, and green vegetables without affecting your blood sugar that much.

If you want more consistent blood sugars, it only makes sense that you would not only know how many carbs you ate so you could give yourself insulin to cover them, but that you would also limit those carbs. If you ate fewer of them, you'd need less insulin, and your blood sugar wouldn't seesaw so much.

I won't say how drastically you should limit those carbs. Different people react to these plans differently, and not everyone can handle restricting such a core part of the diet. It's up to you and your doctor or nutritionist.

What I would urge is that you do some reading. Not just the books by folks like Dr. Bernstein or science journalist Gary Taubes (both of whom advocate very low-carb diets), but also books and websites from those touting more moderate approaches (like the South Beach or Mediterranean diets). Or books on the Glycemic Index.

You already plan your meals to one extent or another. It only makes sense that you pick an approach that feels right to you.

Take responsibility.

I don't want to write this, and you don't want to hear it. But it's the most important point I can make, and it's the one that any person with diabetes must take to heart.

This is your job. This is your life.

Minnesota's Mayo Clinic puts this item on top of its list of "10 ways to prevent diabetes complications." You have to take responsibility, the clinic says, and you have to make the long-term commitment that such responsibility requires.

Ultimately, you can blame no one else for your health or your decisions. Diabetes is a disease that depends on the choices that we make, day in and day out. The decisions often seem small and unimportant. But over time, they accumulate and mark the progress of the disease.

Do we stay healthy, monitoring our blood sugars and food intake, consulting with our healthcare professionals? Or do we let these healthy behaviors slide, with the understanding that we'll always have time to fix it later?

We don't have time. We have to address our health now.

That doesn't mean we panic, and it doesn't mean that we can't ever have a chocolate bar again. But it does mean that we must take real responsibility for ourselves.

Ultimately, if you take responsibility for your disease, the other seven tips here should follow naturally. They're all about taking a commonsense approach to a challenging situation and improving it bit by bit and day by day.

You won't be perfect. But you don't have to be. You just have to be better than you were yesterday.

*These tips are not intended to replace your healthcare's professional advice. Ask them for their opinion, prior to making any changes to your current therapy.