MODY3 for the newly diagnosed

Receiving a MODY3 diagnosis can be a threatening, frightening time. However, by understanding the disease, and knowing what to do about it, you can live a long and healthy life. This booklet will explain what MODY3 is, and will outline some of the changes you will need to make.

Diabetes mellitus refers to a group of diseases that impact the pancreas and how the body stores and uses both glucose and insulin. Maturity onset diabetes of youth (or MODY) is a rare genetic form of diabetes.

There are three main groups of diseases that fall under the diabetes heading:

• Type 1 is an immunodeficiency disorder, where the pancreas no longer produces any insulin. People with type 1 diabetes require injections of insulin to stay healthy.
• Type 2 is a progressive disease, where the pancreas will gradually stop producing insulin in the quantities required. Additionally, people with type 2 diabetes will exhibit insulin resistance, where they  can no longer effectively use the insulin their pancreas produces.
• All other types. This includes latent autoimmune diabetes of adults (LADA), which is a form of late-onset type 1 diabetes; and maturity onset diabetes of youth (MODY), which is a genetic form of diabetes. These types are sometimes referred to as ‘type 1.5’.

Many people with MODY are never officially diagnosed, as it requires lengthy and expensive genetic testing, and even those results can be inconclusive. You might have been diagnosed as one of the other types of diabetes, and your progression has caused your doctor to suspect you have MODY, or you might have been diagnosed as MODY simply because you show none of the usual signs of type 1 or 2 diabetes. Do not worry too much about having an official diagnosis, though. Enough is known and understood about the management of diabetes—and MODY—to be able to manage your condition very well. Over time, you and your medical team will be able to determine with greater certainty what type of diabetes you have, and how best to treat it.

Despite the name, maturity onset diabetes of youth is not late-onset type 1 diabetes. MODY comes in six known forms, although this number could climb as research continues into the area. MODY is referred to as ‘monogenic’ meaning that it involves only one gene, unlike the more common forms of diabetes that have more complex causes, and involve two or more genes. The types of MODY are differentiated by the gene that is involved. About 2% of all diabetes diagnoses are MODY, and about 70% of all MODY diagnoses are of the type MODY3. MODY3 is caused by mutations of a gene on chromosome 12 called the HNF1α gene.

Generally, people with MODY3 produce a very small amount of insulin or none at all. However, if you have MODY3, you probably do not have very high insulin resistance. This means that that you can use any insulin your body produces or that you inject effectively.

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To keep reading, download MODY3 for the newly diagnosed

I wrote this manual as a final assessment item for uni. I have no intention of updating or maintaining the document at this stage, however if there is sufficient interest in it as an information resource, I could possibly be convinced ;)

A letter to Origin Energy

UPDATE: I have just heard from Kym Diercks at Origin, and called Veda to confirm it, but the defaults have now been removed from my credit report. Not just marked as paid, but completely removed. It only took three weeks, endless hours on hold, about $50 in long-distance phone calls, an ombudsman investigation, a Veda investigation, and lots of swearing.

Thanks to everyone who followed along with the saga, and provided support and encouragement. This isn't over yet, as I still want to contest the legality of them actually getting any money out of me at all, but that's between me and the ombudsman now.

Oh, and if anyone from Origin Energy is reading this post: you suck. Hard.

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UPDATE: After some serious sleuthing, we managed to speak to a certain Kym Diercks at Origin. He told me that they have requested the defaults be removed and that they were waiting for confirmation from Veda (the credit reporting company). In other words, virtually nothing—which was more or less expected. However, the plot thickens ... I called Veda and asked them about their processes—how things work with payments, what notifications are sent, all that stuff—and it turns out that they don't issue confirmations. So $DEITY only knows what Kym at Origin is waiting for ...

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I'm pissed off enough that I've been googling for other people with Origin issues. This one made me laugh: Origin Energy- experts at wasting your time.

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UPDATE: After I spent another hour on hold this afternoon, my partner gave it another try and managed to speak to someone at head office. He got her email address and forwarded her the email I sent on Monday, along with this note. I haven't been called yet ...

As discussed this afternoon on the phone, the below was sent on Monday.
Monday afternoon, there was a phone call from an Aaron who would not give his last name who claimed the default would be removed.
It has not been.
Since then, Lana has spent at least two hours on long distance phone calls, being put on hold while calls are transferred, then never answered and eventually, your phone system hangs up.
Yesterday, the longest phone call lasted 42 minutes. Today, 65 minutes.

The Energy Ombudsman case file on this matter is 2010/11/01104.

Origin are not doing very well in maintaining any image of professionalism in this matter.

I request that someone with the authority to remedy the situation call Lana on [redacted]. Clearly, calling Origin Energy seems to be a waste of our time and money.

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UPDATE: I have now broken my previous record for waiting on hold ... 1 hour and 5 minutes before they hung up on me this time! Perhaps a new record tomorrow, I'll keep you posted!

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UPDATE: I've contacted the Energy Ombudsman about this matter now. For posterity, the reference number is 2010/11/01104. They will give Origin ten days to remove the default. Then we get to argue about the legality of enforcing a payment that was due over twelve months ago ... !

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UPDATE: We did receive a phone call from a man who would not give his full name. It was the generic "yes, hello, we got your email and we're doing something about it" kind of call that makes me think they're lying to me. I'll believe that they're doing something when I have some proof of it.

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Subject: An unfulfilled need that creates the best opportunity

Good morning

My name is Lana Brindley and I have never been a customer of Origin Energy.
Despite this, your company is largely responsible for upsetting my Christmas dinner plans, and so I am writing this in the hope someone there will show some initiative, fix the issue, and save Christmas.

I will start with some history.
In 2007 I lived in Annerley in Brisbane. While there I was the customer of a power company whose name was not important enough for me to remember. I left Annerley in December 2007 and moved to Canberra. My housemate in Annerley stayed. He was also a work colleague, so I was in regular contact with him and he sent me batches of mail every few weeks. This meant that I could finalise any outstanding bills and notify everyone of my new address.

At some point my former electricity supplier was acquired by Origin Energy. I knew nothing of this, of course.

At this point I will note that I have never - even now after several weeks of this saga, and several weeks of promises to provide one - seen any bill or correspondence from your company.

It appears that at some point, though, Origin decided that I owed them two lots of $495.

The only reason that I worked this much out is because I applied to extend my mortgage to refurbish my kitchen. The bank declined the extension, because of the defaults that Origin put on my credit record. Which means that my kitchen will now not be fixed before Christmas. I’m a bit upset about that. My daughter was a bit upset too, when I told her that Christmas was going to be cancelled this year.

But I guess there’s no chance of Origin coming to my place to cook the roast.

For starters, I can’t work out how any company can put defaults against my credit record without me knowing who the company is, how much is owed, or even that I owed any money. When I pressed one of your customer escalations team, they told me that my account history shows that they have never contacted me about the outstanding account.

This might be another good time to mention that I have never received a bill from Origin Energy. I have never received a reminder notice, or a phone call. And considering that my mobile number has not changed since last century, I should be easy enough to track down.

So, apparently, Origin Energy have been unable to contact me. Interestingly, I seem oddly unable to contact Origin as well. I have spoken to exactly two people about the incident. One who shared my account number and told me there was only one debt. And another who kindly provided some BPay details so I could pay the bill. Each time has required a wait on hold for over fifteen or twenty minutes. Immediately prior to penning this letter, I was on hold for 45 minutes before the call dropped out. You might agree that this can make one a little frustrated.

I have been promised bills so I could pay the outstanding amounts. They have not been received.
I have been promised that the defaults would be removed. This has not happened.
I have been promised that there is only one outstanding amount. My bank would disagree.
I have paid one amount. No one seems to know anything about that, though.

So, I have some questions:
- How much do I owe Origin Energy?
- What do I owe Origin Energy for?
- Has my payment of $494.90 (18 November, Receipt Number [redacted]) been received and credited?
- What efforts have Origin Energy made to recover this outstanding amount?
- What is Origin Energy going to do about this whole debacle?


Could someone with the capacity to finalise the matter in a timely and professional way please do so?
In time to save Christmas?
How about someone give me a call? I promise I won’t put you on hold for 45 minutes, and then hang up.

[signed]
Lana Brindley
Account numbers (from the credit report): [redacted] & [redacted]
Phone: [redacted]

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After posting this, I received a response from the lovely Ben Dechrau. It's too long to fit in a comment, so I've reproduced it here:

Hi Lana! Just got your link to this page and thought I'd share my
experience with your readers rather than just you.

I recently received a default from Origin for not paying a bill they sent
to the wrong address. I moved in to a property (let's call it B) in
February, from a previous house (A) and then moved to house C in June.

I called Origin Energy to inform them I was moving out, organised a final
reading and gave them the address for house C. They sent one bill (gas or
electricity) to house C, and the other to house A.

The one that was sent to house A was obviously never received, and was
sent way after the postal redirection stopped. They never once called me or
checked their system for other addresses. They simply slapped a default on
my credit report.

I found this out when applying for a new credit card. Luckily I had it
removed before I applied for a new mortgage two weeks later.

How to have it removed. Lana - I see you've done most of what I'd do
already, so for the benefit of any other readers:

In addition to determination, you'll need a stern voice, unwavering belief
that you will have it removed, Veda's phone number (1300 921 621) and
Origin's direct line phone number (02 9271 4947).

Call Veda and ask them for the account number or reference number Origin
have marked your default with. You'll need your name, address and date of
birth to identify yourself with them.

Call Origin and ask the person who answers the phone to understand that
you're very angry right now, but that you realise they want to help and
would they please excuse any raised voice - you will try and stay calm.
This in my case was true, but also puts the other person in a position of
power - you have acknowledged you are relying on their help. It also means
they can empathise with you, which makes them want to help you.

Tell them you have a default that was erroneously placed on your credit
report with the account number blah. They will look it up. Explain the
situation and ask to be put through to the legal and payments department.

Now depending on your situation you will either owe them money, or you
don't. In my case I did, I paid and was told the default would be removed
because it was their fault. One week later I called Veda and confirmed this
happened.

If you don't believe the outstanding amount is your responsibility, you
will need determine what the fees are for. Give them your current address
and ask for a copy of the invoice.

Once you receive this, check all dates to determine if you lived at the
property at the time of the bill or not. If you are liable, I'd just pay
and get the default removed.

If you're not, get your evidence together. Find out when you moved out.
Call Origin as a new, separate call, and ask the person who answers if they
can help confirm a move-out request was made. Get any reference numbers.
Note the time of the call and the person with whom you spoke. Get a copy of
your rental agreement and bond refund letter to corroborate move-out dates.
Once you have lots of evidence, phone up and ask for the fax number of the
customer support department. Don't get in touch with legal yet. Fax it
through, clearly labelled with a cover page. Call within 10 minutes and ask
them to check the fax machine and confirm receipt. When you get this (you
might be asked to call back later depending on where the fax machine is)
start talking to the rep to get them to start documenting the information
ion your account. This will help when you talk to legal later.

Ask them to put you through to legal. Note: the people who work in the
legal and payments department are, based on the experience I had with Con,
self-entitled, rude and arrogant. Don't expect them to help you
voluntarily. I recommend taking a confused and innocent approach to put
them in a false sense of security. Tell them you don't know why this amount
is outstanding, and can they check your account for any confirmation on
move out dates. Have a copy of the invoice handy so you can point out the
date the bill is for, and that you moved out before that. Con told me that
he'd remove the default for me - no admission of guilt or apology, but hey
- a means to an end! Sell your dignity for a few minutes and get 7 years of
good credit back.

Now: Lana - you've tried a lot already, so if I were you, I'd call every
morning at about 10am. If you call last thing they'll want to fob you off
and go home. Call too early and you'll compete with everyone else and
they'll still be waking up. Call, ask them to look up your account, ask
them when you can expect to have the default removed (hopefully it's
mentioned they will do this on your account - ask for it to be added if not
and follow the process). Keep at this every day and soon the call centre
staff will know you and want to get you out of their faces.

Persistence is key, closely followed by coming across as confused and
innocent. Put them in a position of power and authority, make then feel you
are dependent on their help, act innocent and the natural instinct to
protect will be awoken.

Best of luck to anyone else who's going through this...

We got the 'bete

Visit TuDiabetes


For every view of this video, Roche (the company that makes Accu-Chek diabetic products) will donate life-saving insulin to a child. And if you have diabetes, participate in the Big Blue Test on 14 November, as well. Just test your blood glucose, get active for 14 minutes, then test again. Here's the vid:



And as for "We got the 'bete" well, I can't take the credit, as it came from a TuDiabetes member. Unfortunately, his post has since disappeared into a digital void. All the same, once you do it once, you'll never quite be able to stop singing this song every time you think about "the 'bete":

Kitchen

Astute followers of this blog (if any of you actually exist) might remember this post about the kitchen in the house I bought last year. Well, according to plan, the house has appreciated in value enough for me to fork out (read: "beg the bank for more money") to get the kitchen ripped out and replaced. It's due to happen during December, and I'm really terrifically excited about it. Even choosing taps and doorhandles has gotten me into a lather, recently.

I've been a pretty keen Freecycler over the past few years, so it seemed logical to me to post the entire kitchen as an offer on our local freecycle network. As I was writing the post (complete with photos), it occurred to me that this serves as a great chronicle of what our kitchen was when we moved in. Once the new kitchen is in, and the memory of beaten copper rangehoods and dropsy oven doors fades from memory, I might wish to look back on once was ...

~~~~~~~~~~~~~~~~ Enter dream sequence ~~~~~~~~~~~~~~~~

The kitchen is late 70's vintage, and when I moved in just over a year ago it had orange laminate benchtops. I had the benches painted white with laminate paint at the time. Since then, the paint has begun to chip and flake in some places, and of course it's also picked up a few stains. If you wish to use the benchtops, I am more than happy to give you the remainder of the laminate paint and primer so that you can touch it up.

The cupboards are all standard-issue plyboard (not laminate like modern kitchens). There is a little bit of water damage in the under-sink cupboards, but other than that they are all perfectly serviceable, if not very pretty. The doors have a wood-grain look finish, and small round knobs. I've lined most of the cupboards with cheap floor lino. If you want to use the cupboards, I'm happy to give you the remainder of the roll (there's still heaps there), so that you can re-do them. There's nothing wrong with what's there (it's only been in for about a year), but there's probably some marks on it, especially from the pantry.

The oven is a Chef 'Dynasty', fits a 700mm cavity. I think everyone's mother has had one of these (my Mum had at least two, actually). It's the old-fashioned sort with the lift-up oven door, and the grill at the bottom. It all works perfectly, the thermostat is actually really good, and I've cooked many cakes and biscuits and roasts in it. It even has a rotisserie and (I think) all the bits for it (I've never used it, though, so can't comment on how well it works). The only issue aside from the mission brown is that the hinge on the oven door doesn't always catch properly, which means the door won't stay open on its own. I'm told this is a common problem with these ovens, and believe it's possible to get them fixed and/or replaced. I've never bothered.

The stovetop is a Westinghouse 'Cooktop 464', with four solid electric hotplates, fits a 900mm cavity. It has two large and two small hotplates. One of the large hotplates has lost its knob. The burner still works to the best of my knowledge, if someone handy manages to replace the knob (which I'm pretty sure I have hanging around somewhere, if it matters). Otherwise, the other hotplates work just fine.

The rangehood is the centrepiece of this stunning kitchen. Beaten copper, what more needs to be said? It works, but I suspect it was last cleaned in about 1983. If you're brave, or just have a passion for beaten copper, this is the jewel in the crown for you! ;)

The sink is a full double bowl stainless steel, with dual taps, and a small drainer on either side. Nothing else to report.

I will be replacing my fridge too, but they're pretty hot (badoom-tish!) items generally, so I'll list it separately once I've taken delivery of the new one.

Oh, and if you're after some late 70's genuine metal venetians (all working, none clean), in various sizes, I have the kitchen one (and several others) available too.

Of course everything is still installed and in use until December. That said, I've asked the tradies to remove it all for me, so you should just be able to pick up the bits you want and walk away with them once they're out. If I know you want something, I can ask the tradies not to totally destroy it on the way out. And it probably goes without saying but for the appliances at least you will need a qualified sparky/builder etc to install them for you.

If you want to know more, please email me and we'll work things out.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Pictures of the shiny new kitchen to come ... stand by!

For my birthday, I got a new diagnosis

I've been a type 2 diabetic for about ten years. Or so I thought.

I've been lucky so far. For the past ten years my diabetes has been well controlled using diet and exercise. No pills, no injections, no six-times-a-day blood testing (just every so often). Even when I was pregnant with T, I only had to have injections once or twice daily, and I have never suffered a hypo (short for hypoglycaemia, or low blood sugars).

Normally, people who get type 2 diabetes fit a certain type: they are over 45, often overweight, and sometimes have other conditions such as heart disease or high blood pressure. I was 21, in a healthy weight range, and had no other medical conditions. What I did have, though, was a pretty scary diabetic family history.

My Mum was diagnosed as a type 1 diabetic at the age of thirteen. I grew up in a house where the distinct smell of insulin preceded every meal, and when Mum didn't look well the first thing you offered her was not a cup of tea, but a jellybean.

About a year ago, my blood pressure skyrocketed, and I started taking medication to bring it back to normal non-heart-popping levels. I hadn't been checking my blood glucose levels much during this time, preferring instead to concentrate on getting my blood pressure back down. And so it was during a routine visit with my GP a few months ago that they checked my blood glucose for the first time in over a year. Blood sugars should normally be within about 5-7 mmol/l (that's 90-126mg/dl for the Americans amongst us). On this occasion they were 20.0 mmol/l. That stupefied my doctor, anyway, "Are you feeling OK?" she asked. I was, so I just closed my eyes and tried to make the number go away.

I started afresh on the diabetes mill-wheel. It was like being diagnosed all over again. You get sent to the diabetes educator to be re-edumacated, the endocrinologist, the podiatrist, the nutritionist, the opthamologist. I began taking oral medication: small doses of Metformin to begin with, then adding Januvia a little while later. My day now consists of 14 tablets in five doses during the day, between blood pressure meds, diabetes meds, and the oral contraceptive pill. Suddenly, I'm becoming quite well-known at the chemist, and the pharmacist now addresses me personally by name whenever I'm in. It's nice to be loved.

It was during an endocrinologist (diabetes specialist) appointment that I had an extremely interesting conversation. My doctor had commented that I had only put on about 5kg since I'd first seen him, and there had been nearly 10 years and a baby in the middle of all that. He congratulated me, I said thanks. I'd worked hard to get and keep the extra weight off, dieting when diabetic is not all it's cracked up to be. Then we started to discuss my mother's diabetes. Mum sees the same endocrinologist as me, and he pointed out how few complications Mum has experienced, despite being diabetic for nearly forty years. And then we got back to my weight, my diagnosis, my lack of risk factors for contracting diabetes at such a young age ... my frightening family history...

It was like a light-bulb went on in his head. He asked if I'd heard of LADA diabetes (sometimes referred to as type 1.5). Thanks to the TuDiabetes community, I had, and had even been told by people in that community that perhaps I had it. I disagreed with them on the forum, and began to disagree with my doctor too. I did not have LADA, and I could back it up with facts. Even the 'type 1.5' name was silly, and had led to much joking around in this house.

My specialist interrupted me. He had studied LADA for his PhD, apparently, and agreed that I did not have it. Well, that was a start. "But I want to test you for it anyway".
"Oh man, why?" I whined.
"To rule it out."
I put my confused face on.

Turns out he thinks I have another "other" form of diabetes, but it's practically impossible (and very expensive) to test for it. By testing for LADA, he's hoping to get one step closer to confirming a diagnosis of Maturity Onset Diabetes of Youth (MODY), a very poorly named and fairly rare variety of genetic diabetes. He thinks my Mum has been MODY all this time too, as it is often mis-diagnosed as type 1. It probably also means T will have it when she gets older. Probably before the age of 25.

So, Lana. You know how all that time you thought you were going great guns and that diabetes was a bit of a doddle? Turns out it ain't, Sunshine. Not for you, not for your Mum, and not for your daughter either.

Happy birthday!

30 Things I Have Learned So Far

This blog turned three a couple of days ago. This auspicious occasion is usually marked by the precipitous drop into the crazy novel-writing month of November (see the NaNoWriMo website if you're not sure what I'm talking about). This November, however, the only crazy writing will be the penning of assignments, and the ordinary crazy writing of work-as-usual. Yes, this year (and probably next year) uni comes first, and NaNoWriMo gets knocked back a peg on my list of things to do. Let's aim for for a big 2012 comeback, huh?

Anyway, I would still like to celebrate the fact that this blog is three, and that in a few days I will hit the big three-oh. To do so, here are thirty things that I've learned so far:

30. Tea is good.
29. Raising a child is hard work and involves being spewed on a lot.
28. When a child gives you a sleepy hug, it is worth every bit of hard work (and vomit).
27. Work can be fun if you have the right kind of job.
26. The best way to learn about stuff is to either write it down, or tell someone else about it.
25. There are stupid people in the world, but for the most part they're harmless.
24. There are really smart people in the world, but not all of them are harmless.
23. Sometimes it's hard to tell the difference between extreme genius and extreme stupidity.
22. Being involved with people that have passion helps incite you to be passionate too.
21. Teaching is more educational than learning.
20. Teaching can also be heaps of fun.
19. Learning is fun too. It is also addictive.
18. Going to uni once or twice is expected. Going back for a third go is just crazy.
17. Friends are important, but you only need a couple of really good ones.
16. It's OK to say no to all sorts of things.
15. It's OK to say yes sometimes as well.
14. You can be a good person, without having to help every bleeding heart.
13. You need to pick and choose who deserves to have slices of your time. Tell everyone else to go jump.
12. Love is about more than just sex.
11. Sex is about more than just love.
10. It's OK to leave the party early if that's what you want to do.
9. The only person who can control your health and fitness is you. No one is going to do this for you.
8. Life throws curveballs. Sometimes the only thing you can do is duck and run.
7. When you stumble, you are still in charge. Pick yourself up and carry on as best you can.
6. It doesn't matter what you do, some people will still shit on you. Those people are not friends.
5. Writing is therapy.
4. Tea is therapy too. Did I mention tea already?
3. Don't be afraid of massage. It's several kinds of awesome.
2. Bikes are several kinds of awesome too.
1. Don't ever be afraid to stand up and shout like you know what you're talking about. Confidence can go a long way.