Diabetes Week : Research, Research, Research… – by Jenny Foster


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Research, research, research … when it comes to diabetes, it’s all we ever hear!
As a parent of a child with type 1 diabetes, it’s hard not to be immediately cynical when you hear talk of research.

I don’t mind admitting that when I see a little You Tube video of a new-fangled piece of equipment not yet on the market, or I read an article of a scientist somewhere finding a link between something and something else, I catch myself thinking ‘oh here they go, trying to justify all the money we’ve raised!’ There is a good reason for my cynicism; the fact that none of these developments are an actual cure and really that is all I want. It’s what we all crave and desire and we won’t be happy until we get it! Right?

Well, lets take a minute to be fair. I’m a parent of a child who was diagnosed with Type 1, insulin dependant diabetes in 2010 … lets imagine if he had been diagnosed 100 years ago in 1910 …

In 1910, as his parents we would have been given the grave prognosis that Ewan wouldn’t survive any longer than a year. That year would have been spent in hospital trying to manage the complications he would have due to his high blood sugar levels and eventually he would have died from ketoacidosis and all because his pancreas had stopped producing the life-essential hormone that is insulin.

So put plainly, if it wasn’t for research, Ewan wouldn’t be with us today.

It was only in 1921 when the story of research really began with the realisation that insulin could be artificially accepted and then used by the body. A young surgeon whose name we have all become familiar with, Frederick Banting, and his assistant Charles Best, kept a severely diabetic dog alive for 70 days by injecting it with a murky concoction of canine pancreas extract. Then, with the help of Dr. Collip and Dr. Macleod, Banting and Best administered a more refined extract of insulin to Leonard Thompson, a young boy who was dying of diabetes. Within 24 hours, Leonard’s dangerously high blood sugars had dropped to near normal levels and it was then that the hopes and dreams of parents like me all over the world were finally realised and people stopped dying of diabetes and started surviving. That is what research is all about!

Since then research has taken a varied route from the determined biologist fixating on a cure to the realistic and practical scientists sensibly finding ways to improve the day to day lives of those living with diabetes. If Ewan had been diagnosed anytime in the past 75 years, his life would have been so very, very different …

If Ewan had been diagnosed in 1935, we would not have known that he was specifically type 1 diabetic as apposed to type 2. It was not until that year when Roger Hinsworth discovered there were 2 types of diabetes that endless new avenues of treatment and research opened up.

In 1936, although there would have been insulin available to Ewan it would only have been fast acting, so balancing food, exercise and insulin intake would have been impossible. It was only in 1936 that PZI, a longer acting insulin, was created.

If Ewan had been diagnosed during the 40’s and 50’s he would have had to endure injecting his insulin using large reusable needles that not only hurt, but also had to be sterilised for 20 minutes after every use. So, when Becton-Dickinson introduced the single use syringe in 1961 it would have been a revelation and a life-enhancing time for Ewan.

Up until the 60’s Ewan would have had to use test tubes and chemicals to test his blood glucose, taking up to half an hour each time to get the results! So thank goodness that urine strips and the first portable blood glucose meters were also developed during that decade.

If Ewan had been diagnosed in the late 1970’s he may have been ‘lucky’ enough to have one of the first ever insulin pumps… only problem was, they were so big he would have had to carry it around in a backpack!
If during the 1980’s, 90’s or 00’s we received the news that Ewan had been diagnosed with diabetes, in comparison the news wouldn’t have seemed too bad! We would have known it was type 1 as apposed to type 2 and we would have had a choice of various portable monitoring systems and the comfort of him using small pen-like injection methods. Even in the most recent past, needle sizes have continued to get smaller and pre-filled insulin cartridges have been created. Blood glucose monitors have just kept getting more compact and full of extra technologies and insulin pumps have become more mobile, technologically advanced and readily available.

So… because of research and the fact Ewan was lucky enough to be diagnosed in 2010 and not 1910…
We have had the luxury of choice. Ewan has tried three different insulin regimes, used 4 different types of blood glucose monitors and tried 3 different types of insulin up until we found the regime that suited him best. All the while he has continued to live his life like his friends, enjoying sport, food, socialising and school.
Sometimes we should all take a minute and appreciate the world we live in now. Ewan might not see a cure in his lifetime but I am sure his lifetime with diabetes will become easier and easier as the years go by, as all the research continues to bring improvements that are leading the way towards that much anticipated cure.

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Hi Pat – so sorry to read what your granddaughter is going through right now. We’ve sent you an email with some advice, plus links to a very helpful charity called DWED – along with details of our Careline who should be helpful too.

Hi, my granddaughter who is now 18 was diagnosed with type 1 when she was 6. It has been a real rollercoaster and for about 8 years her diabetes has been very unstable. She is in hospital regularly with ketoacidosis (is this right spelling) as she is now admitted with 7.2 ketons. But the real trauma for us as a family is from her eating disorder which has developed slowly over the past 18-20 months but has increased recently and now she eats just 1 meal in the evening. Her weight has plummeted, she has various infections almost all of the time and frankly we are terrified of losing her. She rarely attends an eating disorder clinic because she is so ill, and it doesnt seem to help her much, she doesnt talk much about her condition to anyone, the diabetic clinic are only really concerned about her diabetes, Her GP tries but she wont talk much, just yes, no and shrug. Where can we go?????? She has had to leave 6th form as mornings are particularly bad, her life is so, so sad and heartbreaking to myself and grandad, what can we do. I hope you can help us.
Thankyou
A worried Nan

Hi Catharine,

Our Careline are always here for you to talk to if ever you need to chat or have any questions :

http://www.diabetes.org.uk/How_we_help/Talk-to-someone/Careline/

It is not unusual for a child to not want the responsibility of injecting or of having diabetes. If she is not ready for this then there is no reason not to keep the responsibility with yourself until she is ready to do more herself. We hear from parents/children of all ages who aren’t ready for this so it’s not uncommon and there is no rush.

You may find it helpful to ask your diabetes team for advice about ways you could help support your daughter (possibly without your daughter present) to discuss the help your healthcare team can provide for you.

My 10 year old daughter is completely unaccepting of her diabetes despite her diagnosis at the age of 2. she does not attend hospital visits nor will she do her own injections, she often gives me folded pieces of paper saying” I haven’t got diabetes!” Im very concerned about her future and hope she can turn this around.

Very interesting. I was diagnosed 30 years ago and mixed two insulins in a disposable syringe twice a day. Lunch had to be eaten at 1 pm on the dot, and heaven forbid you were ill. You still had to eat. Syringes, lancets etc were reused, and BM sticks were cut in half to make a pot go further.
The only change in that time has been my introduction to MDI 26 years ago. Despite DAFNE courses and pretty meters, nothing has fundamentally changed.
Research has produced nothing in that time that has helped me except for more expensive insulins. I can’t exercise as MDI doesn’t accommodate my needs. I am not a child or a user of A&E, so at the age of 43 I am at the back of the queue for pump therapy or heaven forbid the artificial pancreas that was on the news yesterday.
I’ve heard about a cure for 30 years and believe me they are no closer to finding one now than then.
Don’t kid yourself that Research will make life easier for your son, by the time the next big thing comes along, 26 years?, he’ll be back of the queue too.
Bitter? No. Angry? Yes.

An interesting read on diabetes and some insulin facts I wasn’t aware of. I think we do all learn from the past and am sure our own experiences from whenever ourselves or our loved ones were diagnosed stay with us and become our own learning curves. My son was diagnosed in 1998 age 3. During those initial few days in hospital, bombarded by sugar level tests, injections, food to eat/not to eat, risks, etc. I will never forget the smart looking lady, I guess in her late 60s, who came across to our hospital bed and said “please don’t worry, I have had diabetes for 50 years and I am fine, and he will be fine”. She was my relief and a positive inspiration when I needed it most! I read lots of articles about a cure, as Jenny has and initially hoped one would come by the time he reached double figures in age – Robbie is now 18 – and I don’t read as many articles anymore. He lives a full and normal happy teenage life, and for him his insulin pump is his ‘cure’ for now, although one day you never know…

As I read about the strong desires to find a cure for diabetes, I feel I am in the minority. Yes, I would love not to stab myself every time I eat; I would love never to experience a hypo again; I would love to have a full driving license rather than one that has to be renewed every three years. However, when I read about people surviving with diabetes for 70 years (and they were diagnosed before the new fangled devices becom available), I sometimes question the need for a cure and would rather accept my life with diabetes than continue to look for something better: although it’s a pain it doesn’t stop me living my life as I want. So, please, Diabetes UK, continue to invest in research into ways to make my life easier with diabetes as well as curing it.

I was diagnosed in 1964, no home blood glucose meters,rather primitive insulins in different strengths, I remember two very patient and kind staff nurses in the David Lewis Northern Hospital at Liverpool trying to teach me about dosage using different strengths, my maths wasn’t too hot in those days,the NHS scales issued to weigh food, no carbohydrate content tables for any of the commercial foods, boiling up urine/tablets to get historical glucose levels and waiting 3-4 hours in clinic for the blood glucose results to be returned to the doctor. Single use syringes and needles were not generally available then so boiling up syringes and multi use “big”needles was no joke. Its all come a long way since then and I hope that there is more technology on the way to help manage thee condition until a cure can be found!!

I was diagnosed type 1 in 1979, aged eight. I did urine glucose testing and had test tubes and tablets that fizzed away to produce either a blue, green, yellow or brown result which determined how much glucose was present. I can still remember the smell the chemical reaction produced! Hypodermic needles had been introduced by then, but they didn’t come pre-filled and I had to draw up my insulin (long and short acting). The needles were also much longer than they are now, perhaps about an inch in length and also much thicker – ouch! Yes research is improving living with diabetes, but I still long for a cure.

interesting brief history of diabetes discovery,thank you.I was diagnosed in 1973,as a 4 year old and had a needle that needed to be sterilised and only able to do urine testing at home not blood!!Thank god for research.My food was weighed which helps me recognise appropriate portions even today,so don’t throw the baby out with the bath water,great advances have been made but its worth trying to learn from the past without dismissing it.