Tag Archives: type 1 diabetes

Tea time…

Dr. KiefferThere’s a guy, Dr. Kieffer,  at UBC who has headed up a number of research projects related to Type 1 Diabetes. This time around he is driving the bus on the culmination of a lot of pointy head work from around the world. He was part of the Edmonton protocol and I met him a few years back on a tour of his facility at UBC. At that time he was showing off mice who’d been living for a year without a pancreas or insulin injections. Yeah, I know, but wait, it gets better.

His current project involves the use of live insulin-producing cells contained in an implantable device dubbed a ‘tea bag’.  It is contained in a semi-permeable membrane (here’s where the pointy head stuff tea bag copycomes in) that allows circulating fluid to bring nutrients inside to the cells and take insulin produced by the cells back out into the blood stream.

The cells are from the patients own stem cells (magic) which is good on so many levels, like no need for nasty broad spectrum immune suppressant drugs. And the tea bag blocks the big autoimmune antibodies that killed the insulin producing beta cells in the pancreas in the first place. Serious magic-happens-here stuff.

AND (yes, there is more) in order to proceed to human testing it is necessary to prove this wee bio-device is safe should a rupture occur. So if these little cells find themselves on the outside of the membrane but still inside the body (hold on, more ‘magic happens here’ stuff) these cells either self-destruct or they have a marker for targeting by hunter cell (I don’t remember which Clarence 1 - Version 2because my brain froze up back at ‘tea bag’)…Either way seriously cool.

This is important on so many levels. Not only does it tick all the boxes in terms of Type 1 diabetes, the marked cell coding has huge treatment implications for cancer, tuberculosis, MS and the rest of the bio-medical bad news alphabet.

You are now free to get some fresh air and perform the happy dance.

fred and ginger

twist to forget...

Oatmeal?

Continuing in the Island Parent JDRF Youth Ambassador profiles, here’s 2009. I’ve added some images because, well, it’s my blog and I can…besides, it makes it easier to plow through all the text…

Tomas Kalyniuk, 8, wants to be the best goalie in the world; Jessica Schmidt, 8, plans on being a singer, dancer and, if she’s lucky, a clown; Jacob Thomas, 10, is torn between being a martial arts specialist or a massage therapist. At first glance, all they have in common is their shared role as Vancouver Island’s Telus 2009 JDRF Youth Ambassadors.

 The other thing they have in common is lack of surprise about people with Type 1 Diabetes climbing Mount Everest, playing in the NHL or winning Academy Awards. As Tomas says, “Well, yeah, of course they can do whatever stuff they want: they just have to take their insulin and test kits.”

 Carmen Welta, Tomas’s mother, laughs when she talks about how she tried promoting Bobby Clark to her son as a role model. Bobby was diagnosed when he was 13 but went on to fight attitudes of the day by playing in the NHL on the Philadelphia Flyers. Diabetes never stopped him from being the most famous of the broad street bullies and a Stanley Cup champion.

 Tomas knows all about Bobby Clark constantly sipping sugar laced cola on the bench and “peeing on a stick to figure out what his blood sugars were, like, maybe hours ago.” All it means to him, however, is technology has made life for anyone with Type 1 a lot easier.  Bobby did what he had to do and Tomas fully expects to do the same.

 Jessica learned about Type 1 Diabetes in kindergarten when a nurse educator talked to the class. The next year a well informed teacher picked up on her student’s sudden frequent trips to the bathroom and excessive thirst; she knew this wasn’t an attempt to disrupt classroom discipline but the warning signs of a chronic illness. She phoned Jenny suggesting a trip to the doctor for Jessica might be a good idea.

 “I didn’t know there was a difference between this and Type 2…I thought she could take pills for this. Jessica knew all about it:  ‘no mom,’ she told me, ‘I’ll need to take needles every day.’”

 Even today in this country children die because these early warning signs are ignored by the adults in a position to help: education and understanding go a long way in saving lives as well as improving the quality of life for Canadians with Type 1 diabetes.

 Susan Thomas became concerned when her son, Jacob,  spent play dates rummaging through friends’ refrigerators and suddenly having night time incontinence. When tests for another problem revealed high blood sugars one day but normal the next her own doctor said the boy was too fit, too healthy to be diabetic. Weeks later, giving in to Susan’s pressure the doctor did another blood test. The next day the locum called Susan saying she had to get Jacob to the hospital as soon as possible. “There’s a bed in the ICU waiting for him.’”

 It’s always a shotgun start for this new life as a family with Type 1. Carmen spent the first weekend in hospital with Tomas, waiting to talk to the dietician, wondering the whole time if her son could have a cheeseburger ever again. Tomas snickers at how his mother was convinced he’d spend the rest of his life on a diet of oatmeal and milk.

 Jacob and Tomas wear insulin pumps and Jessica is happy with the control from new long acting types of insulin. They know they are living a better life than was possible even 10 years ago and that Canada is the world leader in research and technology for Type 1 Diabetes.

 “We want a cure”, Carmen points out, “but in the meantime technology is making life better.”

 Research is their one hope for a future without the certainty of neuropathy, amputations, kidney failure, heart disease, blindness. Imagine being a 10 year old child who knows not only what these words mean but they are a certainty in your future.

Now imagine you can make a difference.

Now Scotch and Honey I can understand…

It’s October and for those of us with a family member dealing with Type 1 Diabetes that means….flu shots.  Hands up anyone who has heard one of the following:

1,  “I had a flu shot once…first thing I did when I got home was throw up and spent the next week in bed…never again.”

2. “I’ve never had a flu shot and never had the flu…lots of (insert favourite nostrum from ‘fresh orange juice’, ‘whole bulb of garlic smoothie’ to ‘wearing an old sock around the throat’ here) is all you need.

3. “It’s all a plot by the pharmaceutical companies”

4. “What, don’t you know it will give your kid autism?”  (this is frequently mentioned by people who wouldn’t recognize autism spectrum disorder if it stood in their living room juggling chainsaws….)

Of course this isn’t restricted to those of us who happen to be in the ‘chronic disease’ community.  We just deal with it on an annual basis. New mothers also go through the debate when their little bundles of love face that traumatic first round of immunizations.

When my oldest was a cuddly bundle of promise I dragged myself out to mother/babe groups in hopes of finding human companionship. I had coffee with one uber-mom who sized up my daughter and asked if she’d had her polio immunization. On hearing she was up to date on all her shots, I was directed to change her diaper on the bathroom floor instead of the change table. She might throw weakened polio viruses, you see.  That way she could keep the door closed and dettol the room before her little widgums could be accidentally exposed.

She was concerned vaccinating her boy could either kill him or cause him to be somehow less than perfect due to the big pharma conspiracy.  Matter of fact.

Oh. I see. Gee, look at the time–I have to get home before the line up at the laundry rocks down by the river gets too long….

Fast forward 12 years to when my daughters are in school and whooping cough has hospitalized one of their classmates and several others will be kept at home for  months. The school sent home a notice warning of the Pertussis outbreak in the school and to make sure immunizations and boosters are up to date.

Now I am older than dirt. I admit this. But I remember parents in those days were good little sheep who made sure we were all inoculated against anything for which there was a vaccine. Oddly enough, I don’t recall any Pertussis outbreak occurring the entire time I was in school. Or for many years afterwards.

I do recall reading about it in books or seeing it in movies about pioneer life.  A child coughing to the point of gagging, a sheen of fever; the doctor walking out of the room, dejected, closing the door behind him as we briefly glimpse a weeping woman throwing herself onto the bed clutching at her now silent child.

A bit much? Okay, the mortality rate for Pertussis isn’t as high as, say, being hit by a train but it is substantially higher by a factor of 1000 over the mortality rate of complications from the vaccine. Pertussis also leads to life long complications like asthma, COPD and the certain knowledge your parents are total dumb asses. Okay…that’s more like a complication of adolescence but it continues long into adulthood, providing you survive a childhood in their care.

Having a child with Type 1 diabetes cuts out all the well meaning arguments and any doubts you may harbour about the efficacy of this vaccine mumbo-jumbo. The fact of the matter is even a simple flu can wreak havoc on a person with a compromised immune system. The inability to keep food or fluids down isn’t merely inconvenient: it’s a medical emergency to the diabetic.

So, the bottom line here is that this year’s flu vaccine is available and your local health clinic will be announcing times when to get your flu shot.

As for an inoculation against ignorance…that one hasn’t been perfected yet. I recommend a short, sharp smack upside the head.

If you live in BC go here to find your local clinic and hours http://www.health.gov.bc.ca/flu/

Some other interesting links:

A great blog about infectious diseases and protecting your kids: http://blog.pkids.org/

(this entry about pertussis caught my attention)  http://blog.pkids.org/2010/07/

General information about anything medical but careful about looking at some of the pictures…http://www.medicinenet.com/flu_vaccination/article.htm

The Canadian Gov’t’s 2 cents worth http://www.phac-aspc.gc.ca/im/index-eng.php

And for the Americans: http://www.cdc.gov/flu/index.htm

It's a matter of continuing education

The JDRF teen council for Vancouver Island put together a video to go out on YouTube as a way of raising awareness among their peer group and anyone with sufficient tech savvy to operate the site about diabetes and the upcoming walk. Our daughter is one of the teens on there and Mark was asked to help with editing the final version.

It’s a fun thing for the kids, of course and Mark likes anything that involves technology. We’ve all posted the final product on our facebook accounts and forwarded it to anyone who isn’t connected otherwise. Seems pretty straightforward.

Maybe it’s ’cause we live with this so much, so constantly, we were pretty sure it covered the bases but there is still room for a few of the old misconceptions to creep in to what it’s all about. Since posting the video a friend of ours did a commentary on his podcast about it. This is a good thing as his podcast is far more popular than ours. This is the “any publicity is good publicity” school of thought. Anyway, somewhere in his meditation he started talking about the epidemic of diabetes and how we need to pay attention to nutrition and to exercise more.

I’m sure he didn’t realize it but it sounded a lot like he was speaking of diabetes as if it was all one illness. I’m sure that wasn’t his intention and that he was leading from one thought to another without necessarily drawing a line between them. So, with all due respect, I’m gonna spin a little on this one small issue that plagues diabetics.

Hands up anyone, how many types of diabetes are there? Anyone? Hello?

Who guessed 3? And how many can be traced to lifestyle? 1- unless you consider pregnancy a lifestyle.

There’s Type 1, aka Juvenile Diabetes or Insulin Dependent Diabetes. It is the result of an auto-immune reaction by the body towards the cells in the pancreas that manufacture insulin. So far there is no known reason for it, no cause, no detectable trigger. Of course there are a lot of theories – and I’m not talking about the dancing under a full moon without one’s foil helmet theories that seem to abound – some of which tie other auto-immune diseases like rheumatoid arthritis as a possible family genetic link. Why it starts is still at the white mice and electron microscope stage.

Then there’s Type 2 or Adult Onset diabetes. This is the one that is causing all the fuss, grabbing all the headlines. It is becoming epidemic in our society and it is controllable by diet and exercise. To some extent it is inevitable because as we age our insulin production decreases and the cellular tendency to resist insulin increases. The scary thing is it is appearing in children and this is what grabs the headlines. Long story short, over fed, under exercised children are at risk of Type 2 diabetes BUT not all children who have diabetes are Type 2.

When you have an infant, however, that is diabetic you can be pretty sure it isn’t because mom was using chocolate milk for the 2:00 am feeding.

The 3rd type of diabetes is Gestational Diabetes. It can occur in the 2nd trimester of pregnancy but more often in the 3rd trimest. It looks a lot like Type 2 in that there is increased insulin resistance and an inability of the pancreas to produce sufficient insulin and may require insulin injections for the mom. The American Diabetes webpage has a decent amount of information on the subject; here’s a link to their page on gestational diabetes. I’ve used the American site because it seems the Canadian site is mostly concerned with Type 2 issues.

So, yes, it is important to eat right, exercise and take care of your body – eat leafy greens, take vitamins and cram in fibre. Every day another page gets written in the owner’s manual of this lump of mortal flesh and we really can’t afford to skip the few basics we know actually work. Eat right, get plenty of fresh air, look both ways before crossing the street and work together to keep learning as much as we can.

Oh, and to always say thank you.

It hurts other places too

direct costs for aproximately 1 month:

Pump supplies – infusion sets – $318

– syringes – $118.

test strips $ 75.00

insulin $135.00

Pharmacare is an interesting system. It covers some things but not others, lancets but not test strips, for instance or one type of insulin but not another. It was also ‘improved’ so that it doesn’t start covering drugs until a you’ve paid out a certain amount on your drugs. At that point it starts at a scaled percentage of the cost, gradually increasing the amount it covers.

It resets every January 1 and despite paying in over $1,200 a month with all our different prescriptions, we still haven’t hit the pharmacare threshold and it is the end of March.

A good extended medical plan helps a whole bunch, fer sure and I can’t imagine how families without one manage to cope with all the costs. Yes, it is evenutally, tax deductible but between refund time and the next year, most folk like to eat and maybe pay the rent and, believe it or not, go to the odd movie. Yes, poor folk deserve a movie now and then too.

If it wasn’t for our socialized health care system, we’d have gone under a long time ago. That is why, next to Dr. Banting, my big hero is

Tommy Douglas

But more about him later.