Tag Archives: NHS

Is it just me, or…press people, can we please specify which type when talking about Type 1 or Type 2 diabetes?

September 13, 2016

Dear Times Editor,

I cringe as I read articles written by Katie Gibbons coming out of the Times about type 2 diabetes lately. In the last 6 weeks there have been 2 articles that have an attention grabbing headline about the ‘fear of getting diabetes’. But what your journalist really means is: ‘getting type 2 diabetes’.

Please would you be so kind as to specify in all future articles that the fear is real for sedentary people with poor diet and exercise regimes, or those from certain ethnic groups, of getting type 2. And what strain the obesity epidemic is putting on the NHS – but not type 1 diabetes.

Diabetes UK has a press guide for distinguishing how to discuss the two very different diseases here: https://www.diabetes.org.uk/Documents/News/0399B_Journalists_GuidanceA5_V2_2016.pdf

It’s worth noting those of us living with the autoimmune disorder of type 1 shouldn’t be lumped into the fear mongering – we’re already managing what will be a lifetime with our chronic immune disorder and don’t need any additional stress to raise our cortisol levels. Type 1 is not, nor will it ever be, reversible through ‘diet or exercise’. When Katie Gibbons wrote this morning: “One in ten will have diabetes within 20 years”, what she really meant is 1 in 10 will have type 2 diabetes within 20 years. The underlying message in the article is clearly the problem with sedentary lifestyles and the rising obesity problem due to a hefty dietary reliance on sugar – both in the UK and globally.

But still, the headline should have read: 3.6 million people have type 2 diabetes to clarify the huge difference between the two diseases. The clarity is: #t1d is an autoimmune disease and should be discussed as such in the press when writing about #t2d. It is imperative that the press and general public understand the difference between the two. And that the strain on the NHS Katie references is most likely not coming from the ten percent (roughly 400,000) type 1s. In fact, many type1s I’m in communication with fund many of their own supplies, including the very expensive glucose monitoring flash systems (like the Abbot Freestyle Libre) so we can simply and constantly monitor our blood glucose levels because we’re tired of pricking our fingers 10 times a day and don’t appreciate the bulk of the CGM systems.

Katie’s sentence “People with type 1 diabetes usually develop the condition in childhood and it is not linked to diet, weight or lifestyle habits” really should have read: “People who have type 1 diabetes tend to develop this autoimmune disorder early in life, but very little is known about what environmental factors end up triggering the disease and one can develop it at any time”.

There are still too many unknown factors with regards to what causes a person’s immune system to turn on itself and kill those precious beta cells we need to stay alive. Some current thinking in the science is that antibiotics in our food and those taken for medical reasons directly influence t1d coming on which means to some degree one’s ‘diet’ could be an environmental influencer, obviously not in the same sense as a sedentary path, but specifically from eating meat, milk and eggs that are raised using antibiotics. General thinking still believes that a virus caught at some point brings out the type 1 in a person. The truth is no one knows.

I think we all appreciate the press diabetes is getting, as both types are killers, but and also now with our new PM coping every day with this constant disorder, it would be nice to make sure we’re getting the facts straight and not lumping the two together. Can’t imagine the same mistake would be made about cancer, for example, when discussing prostate versus breast cancer. While there may be similarities amongst the two, they are not the same thing at all.

 

 

Is it just me, or…does T1D need a makeover?

August 21, 2016

So, our new PM has Type 1. As I’ve tweeted before, that’s no body’s business but her own. But, selfishly, I’m kind of glad we’re getting some media attention. Channel 4 did a decent tribute to T1D a few weeks ago. The older I get and the longer I live with Type 1, I’m astounded as to how many people think ALL diabetes is the same.

It’s not the same.

My auto-immune disorder resembles your Type 2 or MODY, but it’s not anything like it in its needs and requirements. It’s Type 1. It requires more testing.  It requires a life-long plan on how to cope with the constant inflammation.

Plus, and for me, a defining differentiator: I didn’t do this to myself.  I was born this way, and then something in the environment, at some point in my life, triggered the Type 1. I’ll never know what exactly it was, but I have several hunches. I took Accutane three times between ages 15-20.  I also had a terrible virus in my early twenties, was it that? My diabetes began presenting around aged 27. But, I was young and presumably healthy, I had no idea that the blurry vision and constant thirst wasn’t just from my marathon training or poor diet and lifestyle. It wasn’t until I was 30 that a doctor called me back in for ‘a touch of sugar’ in my blood.

Recently, at my annual NHS diabetic examination, the nurse asked me to come round to his side of the desk so I could see ‘just how much’ I was costing the NHS annually. After pointing out to this nimrod that I am a taxpayer and also Type 1, I then had to point out that many of the items on my pharmacy refills list were actually REQUIRED to keep me alive, something, frankly, for which I would gladly pay. I was horribly offended, of course, by his sheer ignorance especially being ‘in the business’. My first GP in London kept asking me why I needed so many test strips as he was a Type 2 and didn’t test so frequently. I told him that I tried to conserve, but I generally only tested 5 times a day.  “5 times a day?” was his shocked reply. Yes, that’s right. Every time I eat, I actually need to test to see HOW MUCH insulin is physically required to cover what I am about to eat.

My thoughts on diabetes run long and deep. For the first 5 years of my diagnosis, I was miscast as Type 2. Anyone with half a brain can look back now and see that couldn’t be right. I weighed about 64 kilos and was all muscle. There was no way I had Type 2. But I only know that now based on life experience and all my ‘hands on’ with this disease. I also know that Type 2 is not always caused by being overweight, so please don’t think I’m judging. But, when I walked into the most amazing endocrinologist’s office ever – when I first moved to London – he actually laughed out loud and said: “Julie, it’s so nice to meet you, but you are a Type 1”.  How do you know, I asked? Because I just do, he said looking at my then 60 kilo frame. I never blame anyone for any misdiagnosis or uncertainty here. Back 16 years ago when I got this, adult Type 1 was still pretty rare. But it’s sadly increasing as each year passes. A recent school of thought believes there are microbes we are exposed to that may trigger it. For example, in Finland, their cases of Type 1 are globally off the charts. What’s microbally going on up there that’s not happening in the rest of the world? Others think it’s gut borne and from all the antibiotics we’re getting medically and in our food. Genes also play a large role. For example, if someone in your family has Type 1, you go from a 1/300 chance of getting Type 1 to a 6/100 chance. Big difference.

As far as the numbers go, I hope every day my child doesn’t get this cursed disease. It’s not that it’s a total bother all the time, because you do just learn to get on with it and manage it as best you can. But, that’s so easy for me to say since I got it at age 30 and had lived a pretty crazy and raucous lifestyle before then. I consider myself really lucky. I can’t imagine getting it at the age of 8, like my newly diagnosed niece. That’s your whole childhood high jacked by moderation. And whilst I do believe in moderation and balance, I’m also always the first person to say “everything in moderation, including moderation”.

We recently brought home a hypoglycaemic dog and the stress of worrying whether or not he had diabetes over the next few weeks almost toppled me. What would I do if he hypoed? How would I know? There was even the teensiest part of me that wanted to send him back to the breeder (maybe more than teensy). Just based on the personal stress I know his possible diabetes would cause me and my family. Obviously, I didn’t do that simply because I am diabetic and if anyone can handle it, I can, right? But, man…there was a moment of sheer terror.

With my niece’s diagnosis I realise how much more seriously I have to take my healthcare. Funny, right? Because I have a kid of my own, but it wasn’t until her diagnosis that I totally had a wake up call. I think the remaining part of 2016 for me might look like a crusade to educate the world on Type 1 and to see if we can’t make just a tiny bit more progress toward finding a cure. Diabetes.co.uk recently posted that the average Type 1 requires 1462 shots a year, just to stay alive. I was originally semi-offended about the post, because, as a Type 1, you just have to get on with it. But I later realised they were actually doing their bit to help the rest of you understand just how constant it is to live with diabetes.

As with all things me, let’s throw some money at this problem. I love the JDRF society. No child should have their childhood taken over by constant finger pricking and insulin injections. Btw, if I sound ungrateful about the constant finger pricking and insulin injections that are keeping me alive – I’m not.

It’s just exhausting.

When my niece was diagnosed, I bought an Abbot Lab’s FreeStyle Libre glucose monitor that in nearly 15 days has practically changed my life. In this short amount of time, the meter has clocked so much data, I have a good handle on what my current A1C reading is as well as realising I have been taking too much glargine every night which in hindsight has clearly been causing my super low mornings.

Fellow diabetics, can we please campaign to get the Libre covered under the NHS for Type 1s who have completely higher checking requirements? And, can we also campaign to get the FDA in the USA to even clock this device on its radar so my newly diagnosed 8 year old niece can have some libre – freedom – in her new diabetes lifestyle?

Change is hard. And I personally resist change. But these times, they are a’changing. There is a cure for T1D in my niece’s future. Most people can only change if they want to. But Type 1s have no choice. The only thing we can do is change how the rest of the world perceives this disease.

Fight on!

 

Loving my LIBRE

Loving my LIBRE

 For CJ.

Is it just me, or…are the British strangely in denial of how gross head lice really are?

April 19, 2016

OK, call me an American snob, but I do NOT think it is ‘normal’ for kids to run around with bugs in their hair. I’m from California and much more of a crunchy tree hugger than most, but even I didn’t grow up thinking it was okay to have bugs running amok on my head. The one kid I ever knew who did have lice was literally shamed out of most social circles. Not kidding. I’d like to think the stigma for head lice has evolved a bit, but I’m not sure it has and whilst I, myself, am no longer afraid of head lice, I do harbour resentment toward those who aren’t educated about how to treat the problem and continue to let their kids spread it around.

When my daughter started nursery three and a half years ago about a month in there was a notice, very nonchalantly, put up outside the door stating simply: ‘Nits in the Nursery’. I’d never heard this term before, so I had to ask the headmaster what it meant and he, incorrectly, told me that nits were head lice and that I needed to check my daughter’s head that night. I had her coat in my hand which I was just about to put on the shared coat peg and asked him if they transmitted via coats. He also incorrectly told me ‘no’.

Well, I’ve never made that mistake again. The majority of British adults I speak with about head lice call them ‘nits’ and appear either ill informed or disinterested about head lice facts, their life cycles, and how they spread. What happened from our first exposure to head lice I since perceive as years of hell trying to prevent catching them whilst talking to other parents about how to treat them when their kids were the culprit spreaders. We made it nearly 2 more years before I was doing our weekly routine head check (except I had mistakenly skipped a week when there had been a case of lice in the class, and admittedly I had no idea what to look for) when I found the ever dreaded moving needle in the haystack. But by then I was actually prepared. A like-minded good friend of mine had just suffered through an extreme head lice outbreak with her kid and I had helped her prepare a mini brochure (see a theme going on here) for her daughter’s class. I then found Hairforce – lice assassins! and treated the whole family to a professional head check. Well worth the money spent, plus the owner Dee, is a wealth of information on how to treat and prevent one from ever getting lice again. She’s also a believer in the emotional damage that having lice causes – much more so than most adults suspect.

When any of my American friends with primary aged children move to London, they cannot get their heads around the lack of local concern for the head lice problem. Whilst I no longer need a pint glass of G&T when we have kids in the house with lice (I can spot them a mile away – it’s mostly the double-fisted scratching of the head that tips me off), I still don’t understand why British people seem un-phased by this problem not to mention total time suck. I’ve had some of the school moms call me neurotic. Yes, I guess I am neurotic if that means I don’t want a communicable disease. Have you ever heard of scabies? Some call them body lice, but they are body mites and classified as a STD. Shouldn’t head lice be classified in a similar, noteworthy vein as they, too, are highly communicable? Policy says you have to keep your kid at home until it is treated, and by that they mean a dose of chemicals and wham, back into the classroom. We wouldn’t put up with a scabies outbreak in our kids’ classrooms, or even fleas on on our pets, so why is it okay to return your kid back (often same day) with a potential 7-11 day egg cycle festering on his head? Another British mom I know says when she finds them in her kids’ hair, she just flicks them onto the floor. Sounds pretty hygienic, doesn’t it?

And please don’t try to tell me ‘lice prefer clean hair’. Whoever made that one up clearly had a bad case of lice and then passed around this tid bit out of embarrassment and for some weird reason all the rest of us have held onto it as the new urban legend. Scientifically, lice do not PREFER clean hair. They prefer ANY hair. And if you are regularly involved in say washing and bathing your child, then you would spot a head lice problem. They are not that small. One boy we know has an ongoing problem and it’s easy to see why. He has what can only be described as unkempt and unwashed tresses. No way that the lice comb is going through his hair twice weekly or even once a term. To manage them in British preschools, you have to comb out the hair, comb it out and comb it out again.

Needless to say, we haven’t had lice again. Oh sure, I’ve combed out a random bug here and there, but I check twice a week now – religiously – because it only takes one female. This particular primary school seemed to have a wide spread problem with repeat offenders (my experience says it’s generally the same families who either don’t believe lice is preventable or don’t comb out that exacerbate the problem) so in tandem with one of my British girlfriends (interestingly, she was reared abroad!), we crafted a detailed pamphlet on how to manage, treat and prevent head lice. We also found a pharmaceutical company who was in the process of creating a ‘better than Hedrin’ topical treatment (which incidentally, I don’t necessarily support since combing with a metal comb is all that is needed) boasting 30 minutes on the head, rather than the standard 8 hour overnight treatment. This company was ever-so-willing to come into the school and educate the students, staff and parents on the ‘what’s and how’s’ of head lice management. My daughter still talks about it as they brought in a terrarium filled with hair that was infested with lice! Too cool in a disgusting way for a 5 year old, and just the right amount of memorable to know you don’t want those on your head!

However, I still get discouraged when we have play dates or classmates who seem to have ongoing head lice especially when the parents insist that ‘there’s just nothing you can do’ and that it’s not their fault that little ‘so and so’ at school always has them, so it’s inevitable that their kid will as well. Not True. Lice is in fact treatable. It just takes time. If you know of someone at school who has continuous lice, then it’s your responsibility to tell the headmaster/mistress because lice can also be a problem of parental neglect. When my daughter had her lice outbreak, I combed out just over 20 bugs. Dee at the Hairforce said that was a lot, but some people come in with 250 live bugs in their hair. So, if your kid has double digit live bugs in his hair, consider how much time you’ve been giving your kid lately, or consider that your combing technique is really bad. You can see this many bugs with the naked eye. Another friend of mine is a GP and her daughter got an ongoing case that she didn’t notice until she finally saw nits (the hatched and abandoned egg sacks – and NOT the technical term for a head lice outbreak) growing out half way down her very long Rapunzel-esque tresses. She herself admitted neglect as she was going through a very bitter divorce at the time and had not in fact been paying enough attention to her child. If you haven’t been neglectful and are super fastidious and just can’t seem to fight the lice problem, it’s because you aren’t combing correctly with a metal nit comb. There are many great ‘how to’ videos out there on YouTube, linked here to a particularly well explained combing method. And there’s no shame in admitting defeat and calling The Hairforce, they do this for a living and guarantee 100% results.

I know this rant seems judgmental, because it is. And because every time you fail to comb out your kid’s lice infested hair and then send them to school or my house, you create a 72 hour lock down at our house and a total laundry nightmare. Everything soft has to be bagged so the lice will suffocate and everything washable has to go in at 60 degrees or above. We are not interested in losing 3 days of our lives because you can’t take the time to comb out your kid’s head. Just comb it out folks, twice a week. That’s all I’m asking.

For a copy of my detailed ‘treat and prevent head lice’ brochure, email me. And, Nitty Gritty sells a lovely metal lice comb for around £9.