Living with type 1 diabetes!

I've been thinking about this blog post for a while now, but never really been sure as to if I should really write it and where (if I did) I should post it. Secondly there's also the decision whether to write it in English or in Swedish.

Stay active, stay strong, stay alive.

What I will tell you about ultimately concerns more than just me. More than just my son and family. More than just Sweden. Therefore I will write it in English and I will post it on my blog where I intended to write posts related to my science and experiences in the field. However, I would be lying if I said that none of this affects me both on a personal and professional level.

It is important that you know that my purpose with this post is purely to enlighten and give my views on the everyday life, the challenges, the outlook and the science of one of the the biggest, the quickest emerging and sadly also most underrated diseases in the western world. This is a tiny window into the life of my family and my son (and most likely other families battling type 1 diabetes), diagnosed with type 1 diabetes (Diabetes mellitus Type 1 - or just DM1). There are many details on diabetes that I will deliberately leave out, so please, for further reading internet is your best friend. Finally, I would very much appreciate if you, as a reader of this blog, would help me spread the word for the benefit of all the current and future children and adolescents in the world with the same diagnose.

What is type 1 diabetes?

First of all I would like to make a clear statement on the difference between type 1 diabetes and type 2 diabetes. Unfortunately media often refers to the disease as only diabetes, as if type 1 and type 2 were basically the same disease afflicting different age-groups. This couldn't possibly be further from the truth and it is a major driver of much prejudice against type 1 diabetes (most commonly afflicting children). The only thing the two have in common apart from the the name is that the body of the afflicted person can't produce enough of the hormone insulin, responsible for feeding our cells with sugar transported with our blood (thus keeping blood sugar on a healthy level), or lacks production altogether.
Type 1 diabetes is fundamentally different in the fact that it is (as of now) an irreversible autoimmune disease which current research propose is both genetically inherited (many genes involved which can be both dominant and recessive) and triggered by an environmental factor (possibly a common viral infection). In difference to type 2 diabetes there's therefore no way to prevent or mitigate the onset of type 1 diabetes by way of i.e healthier living. Developing type 1 diabetes basically means that you're the wrong genetical composition at the wrong place and time. Unlucky, right?
Autoimmune means that the own immune system somehow has been triggered to unrelentingly attack the insulin producing beta-cells in the pancreas, ultimately fully deactivating their ability to produce the essential insulin, which is the only hormone of its kind with the function of decreasing blood sugar (i.e both cortisol and adrenalin are hormones that increase blood sugar by stimulating the liver to release glucose).
Because of this lack of insulin, the afflicted person's only option is dependency on an outside source of insulin by injections, most commonly by use of needles or the rising technological tool, the insulin pump.

Portable "real-time" blood sugar monitoring with a six meter range.

In spite of advanced technological tools and rapid advances in scientific understanding, type 1 diabetes is a widespread and deadly disease which also (at least) doubles the risk of a "premature" death no matter how well it is treated. It is a constant battle of balance of blood sugar, something that the insulin pump has helped a lot to manage but still is nowhere near as effective as the own body. High blood sugar may lead to cell starvation (if insulin is lacking) and ketoacidosis (acidifying the blood and body) and further down the road a range of complications with function of bodily organs, especially kidneys and heart. On the other hand, low blood sugar may lead to insulin induced coma and death.

Current status and living with DM1

Type 1 Diabetes has an estimated 80.000 new cases worldwide each year, while the total number of people with the diagnose is unknown. It has also been observed to increase in magnitude by about 3 % per year in recent years. Looking at diabetes as a whole (both type 1 and 2) an estimated number of 387 million people worldwide has one of the two diseases (8 % of the world's population) and up to 4.9 million people die each year as a direct result of diabetes.
External insulin dependence (type 1) is a constant management of one's blood sugar which then of course, independent of treatment tools, requires plenty of medical consumables, to an estimated cost of $875 per month per diabetic (in the USA). You do the rest of the math.

Insulin pump consumables which are replaced every third day.

With that said, type 1 diabetes is a taxing disease to treat, with a never-ending learning curve which sometimes feel steep and at other times leave parents and medical personnel alike baffled. Either way, it is a constant home treatment which demand regular (mostly not medically trained) parents to take full responsibility for a deadly disease, where death as a result of unintentional mistreatment is a very real possibility. It is a very intimidating thought. At the same time the ultimate goal for all parents is to, with time, foster independent children. How much more difficult is that scenario for both parents and children when the fledgling leaves the nest for the first time carrying with him/her the responsibility of a deadly disease.
Parents have to first learn and then teach how to monitor blood sugar, using needles and a small computer. Continuous  monitoring with less need for needles is also possible if the treatment is by insulin pump but it still needs to be calibrated at least two times a day. Secondly, the correct insulin need at any given time (mostly for meals, if treatment is by pump) needs to be calculated and administered (by needles or pump). Thirdly, unexpectedly and/or unexplained high or low levels of blood sugar has to be dealt with. Every case of diabetes is as unique as the afflicted individual and is a highly personal story. Parents will often refer to it as an additional child to care for. That gives an estimate of the level of attention it requires. 24 hours a day, every day, for the rest of their lives.
The harsh reality is that, as of today, there's no cure for type 1 diabetes.

Research on DM1

In my molecular lab.

So what does science say? There is plenty of research being conducted around the world with different focus. Some research teams are focused on the demography of type 1 diabetes for a better understanding of the disease and possible prevention methods. There are hopes of developing a kind of vaccine for type 1 diabetes which would decrease or even mitigate the T-cells of the immune system's sensitivity to the insulin producing beta-cells in the pancreas. Secondly, as stated previously, this is also a billion dollar industry where companies make huge profits on providing new technology for rather hefty (in my opinion) prices. This is certainly a quickly developing industry where the aim is to make life easier for diabetics. The current "flagship-to-be" in this industry is the "virtual pancreas" which is very much like the current insulin pump but more compact, with a more advanced algorithm for automatically dispensing insulin as a reaction to increasing blood sugar (the current insulin pumps need to be configured and much of the insulin dispensing is by manual input) and being directly attached to the bodily systems by means of surgery.
However, as you can see, this is by no means a cure to the disease.
This is where the third field of type 1 diabetes research comes in, one which has been pioneered by Swedish researchers in Uppsala and Lund.
This research focuses on curing type 1 diabetes and the last few year's initial medical trials on human patients have shown great promise. Personally, I wouldn't go as far as calling it a major breakthrough, but the researchers are well on their way to countering one of the major issues of any treatment of the cause of the disease as well as restoring beta-cell activity and function. The T-cells of the immune system. They propose to use special cells from the own bone marrow to ward off the aggressive T-cells. There's also a possibility of shielding the beta-cells with reactive oxygen. The use of bone marrow proved successful in at least one medical trial where new type 1 diabetes patients showed full recovery of beta-cell function, thus external insulin independence, within a year after the study's conclusion. However, there are some drawbacks to consider.
This is only one case and it has not been replicated since.
Proper evaluation will take years and it is not known if the renewed beta-cell function is time limited. As an initial substitute for a cure I would argue that a major treatment session every 5 years (or whatever it might be in a worst case scenario) is better than the technological alternative.
It was only conducted on newly discovered diabetes, therefore we don't know if the same treatment will work after years with the disease. There is some hope in this reasoning though, since another team of researchers has shown that the T-cells don't, as previously thought, destroy the insulin producing beta-cells, but rather deactivate or suppress them. A course of events that can be reversed.

The disease, the onset and the society for a young diabetic

Tools for measuring blood sugar.

My personal opinions on type 1 diabetes in general and my life in specific living with the disease, are many and colorful even after just 7 months after the initial shock of my son being diagnosed with it. I think most people having to face the reality of type 1 diabetes go through a phase of denial before the ultimate acceptance. Same was true for me, but to be honest, as a parent and a scientist I think that I, at that point, at least owed it to my son to thoroughly investigate type 1 diabetes, its causes, method of diagnosis and possible explanations. The most unlucky coincidence was that he at the time had inhalation spray for child asthma which is known to increase blood sugar. We hoped for dear life that he would get better within a few weeks, but of course that never happened.
So this was where our journey, with my son, living as a healthy diabetic started, all the while looking to science for answers and hopes of a better life in the future. That, however, is no excuse to not live life to the fullest here and now, which I think is very important both for him and for us. Diabetes shouldn't govern our lives, then we aren't doing a good enough parental job, but rather that we plan and buffer for it. The difficulty in this rhetoric and way of living with type 1 diabetes is the constant ignorance and prejudice of the society (most of it anyway). Many times children with type 1 diabetes are excluded or denied participating in activities solely because of ignorance or fear derived of ignorance on involved adults part. All I ask is for children to be able to be children no matter their conditions, but to break that barrier in case of type 1 diabetes society in general, and people working with children in particular, need to be enlightened on what it is and how it is handled in daily life.
Personally I haven't had this argument yet, but I know that it will come soon enough, and I know it will be an essential one no matter the outcome. Equality is not for everyone when it requires a bit of extra time and effort, because nothing today is free. Though I am thankful that we, in Sweden at least, doesn't have to pay for the life-long treatment of type 1 diabetes.
On the other hand I'm concerned that the billion dollar industry that this constant treatment is, will hamper the progress of the true goal in this story, which is a cure. We have probably all heard the rumors about oil companies that buy and shut down projects for developing alternative fuels.
Further, the ignorance of type 1 diabetes is leading to insufficient funding in terms of charity foundations for research. As a scientist I know that every little penny counts but the neglect of type 1 diabetes is no petty sum. I don't want to discredit child cancer, which also is a terrible disease that still not every child recovers from, but purely for comparison, in Sweden, the foundation of child cancer receives about 208 million SEK yearly, while the child diabetes foundation only receives 8 million SEK yearly. I can't speak for the medical research field but for me as a marine biologist 10 million SEK will fund a rather extensive research project for a small team of scientists for several years. 200 million SEK is a lot of money in this context.

Role models and the future

On clear and calm waters.

There are many examples of public figures in Sweden that have learned to master their type 1 diabetes and still be successful (and a role model), but many chose not to tell their story and many yet are never confirmed cases. Why this is I will probably never know, but I guess that type 1 diabetes, being a disease, is frowned upon. It is a brand that people will get and it is a brand that of course never will further a career. It would be a purely altruistic act, an important one that I wished that more public figures would do to inspire our young and enlighten our ignorant.
I will keep supporting my son in his decisions, in life, and spur him on where needed. Because if there is something that I will teach him, then it is definitely that living as a healthy diabetic should never be a limitation of ones dreams and goals, but if anything, merely a speed bump in the road.
So speaking about myself, I'm now pondering where this road will take us. I'm sure it will be a good place in the end, but what will that end look like.
I'm a scientist and I'm passionate about my field, but it has crossed my mind on more than one occasion if my future instead lies in diabetes research rather than marine biology. It is not as easy as that though, since I've learned how our oceanic systems work, not our bodily systems. There's a fundamental difference although it is biology, and there will probably be plenty of pitfalls for a marine biologist. But how would you start to explain to your growing son why daddy didn't use his research to at least attempt to find a cure?

References:

Out of convenience I pulled most of the above numbers and facts from https://en.wikipedia.org/wiki/Diabetes_mellitus and linked pages.
Also, check out the first successful medical trial on curing type 1 diabetes in this paper:
PO. Carlsson, E. Schwarcz, O. Korsgren, and K. Le Blanc. Preserved b-Cell Function in
Type 1 Diabetes by Mesenchymal Stromal Cells Diabetes Volume 64, February 2015.
If you can't access it, contact me and I'm happy to share it with you.

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