Update on Joseph

When I started writing this blog in January 2019 one of the aims was to raise awareness of Type 1 diabetes, and also to raise funds for research into an autoimmune condition that is often (very often) misunderstood. In 2019, with your help, I raised more than £2000 for JDRF, a charity based in the UK* that funds research into finding a cure for Type 1 diabetes, and improving the lives of those living with it.

I’m afraid to say that I have been somewhat neglectful of this particular aspect of the blog over the last few months. I started this post four months ago, and it remained in draft form until this week. Cake and running took over. Sadly I have been kicked into action by some bad news.

Last year friends in Kenya brought a young man to our attention. This young man, Joseph, has Type 1 diabetes. His life is very different to a young person’s life here in the UK. He goes to school, he plays football with his friends, so far much the same. But – he does not have access to health care in the way that we in the UK have access to our wonderful National Health Service. At 14 years old he has to pay for his medication, his test strips, his insulin. It is not affordable. He relies on donations to help. You can read more about Joseph by clicking here.

Everyone is all too aware of the terrible global pandemic of COVID-19. It has been devastating for so many. The direct and indirect effects of the pandemic have had far reaching and long lasting consequences for physical and mental health; for economic stability on an individual level as well as national and international levels; for climate change; for political stability. Joseph’s story started long before COVID-19, but his situation right now is partly a result of the pandemic, albeit indirectly.

Because of the pandemic Joseph has not been able to attend school, like millions of children across the globe. This means Joseph has not only missed out on education, but also on the health care and food he receives at school. His school nurse plays a very active role in monitoring Joseph’s blood sugars, and everyone at the school makes sure that he has a good diet suitable for his needs. But what happens when you are not at school? What happens if you live in a poor household, with a family not educated about Type 1 diabetes? What happens when you are 14 and left to your own devices in relation to your health? You end up sick.

A couple of weeks ago Joseph was very sick. (All photos are used with permission.)

Joseph got malaria. This made him ill, probably more ill than usual because his blood glucose was very high. When people with Type 1 get ill it’s often even harder to regulate blood glucose than normal. The delicate balance of hormones is easily upset – even on the best days, when everything seems to be ok, blood glucose levels can go up or down dramatically for no apparent reason. It is one thing if this happens only rarely, but quite another if it is a daily occurrence. High levels of blood glucose (hyperglycaemia) cause long term damage to nerves, arteries, kidneys, eyes. Hyperglycaemia impairs the immune system. It makes you feel sluggish and unwell. Add that to a disease like malaria … well, it’s not good.

Joseph’s kidneys began to fail. Your kidneys are responsible for removing waste products from your body. If they aren’t working properly then those waste products build up in the body and make you feel even worse.

In the first hospital Joseph went to conditions were pretty basic.

Joseph is having dialysis in hospital right now. Dialysis is a procedure where the blood is ‘cleaned’ by a machine linked to your body. Usually it is done every other day, and in hospital. It is not pleasant but it saves lives.

Joseph has had several sessions of dialysis, but needs more as he recovers, and doctors try and stabilise his glucose levels.

Joseph has been in hospital for a couple of weeks now, and is slowly getting better. First he was in a local hospital before being moved to a bigger hospital that could look after him better. We are all hoping he will be out of hospital soon.

My friends Tim and Carol are part of a charity that runs the school Joseph attends. Vipingo Village Fund support the Future Hope Montessori School, as well as supporting local projects that benefit all the community. Donations go directly to the charity, and are used directly with and for the local people in Vipingo.

In Kenya there is a national health insurance system – the monthly cost of the insurance averages a day’s pay for local residents. That might not sound like a lot – but when one person’s wages may be supporting a large extended family people often don’t sign up for it. Joseph was not signed up for it at the time of his illness (he soon will be hopefully!). What this means is that the charity is paying all the costs of Joseph’s healthcare. Each session of dialysis costs £55, and the estimated cost of treatment is between £1000-£1500. So far the charity have raised £600 – mainly through appeals on their Facebook page.

I have not been focussing on charity fund raising this year because I don’t want to be a pain! But please, if you possibly can, consider donating what you can afford to help with Joseph’s care. Every penny will go directly to helping pay his medical costs, if you note ‘Joseph’ in the message section of the donation page. If the charity raise more than they need for hospital costs right now the money will be saved in a separate account for future costs associated with Joseph’s medical care. You can be sure that there will be plenty of future costs, even with insurance. You can donate on the website HERE!!!

Tomorrow I will be running my first actual event of the year since January – the Phoenix Party Train. Because of COVID-19 there are security measures in place which mean that instead of everybody running together at 9.30am the much smaller field of 45 runners are starting in groups of 6 at 6.45am!! Luckily for me I am in a slightly later group – at 7.45! It will still mean a very early start. The event is a 6 hour timed run, which means that you can do as many laps (up and down the towpath from Walton on Thames) as you can or want in 6 hours. I am aiming for a minimum of 10 miles, and hoping that I may be able to do 13.1!

To encourage me in this effort please donate towards Joseph’s care – it will make me very happy to know that at least one disadvantaged young person with Type 1 diabetes is getting the care they need to live a healthy and happy life. I am sure it will also give Joseph, his family and everyone at Vipingo Village a huge lift to know that people are wishing him well, and contributing to his welfare. You can donate HERE!! Don’t forget to mention Joseph’s name when you make your donation, and the money will be diverted directly to his care. THANK YOU SO MUCH FOR YOUR SUPPORT!

*There is also a JDRF in the USA.

Type 1 Diabetes – myth busting!

I’m going start by saying straight away that my main source of facts for this post is from the fantastic JDRF website, where you will find a wealth of information about Type 1 diabetes. I have also taken some information from this NHS website. It’s sad that even now, in an age when more information is available than ever before, there is still so little understanding of Type 1 diabetes, and so many misconceptions among the the general population – and unfortunately health care professionals too sometimes.

Myth Number One: being overweight causes diabetes. NO! At least not Type 1 diabetes. Weight loss is actually a common symptom of the onset of Type 1. Type 1 diabetes is an auto immune condition. The body attacks the cells in the pancreas that produce insulin, killing them off. Insulin is the key that enables the transfer of glucose into the tissues of the body e.g. muscles and the brain. Unable to produce insulin, the body cannot use the glucose in food for energy. Instead the glucose stays in the bloodstream. Without urgent treatment it can cause a serious, life threatening condition called ketoacidosis. (Diabetic ketoacidosis is often shortened to DKA.)

Other symptoms of Type 1 diabetes include extreme thirst (a result of the high levels of blood glucose); needing to wee a lot (a result of drinking a lot); fatigue (no energy available from the glucose).

I think this idea that somehow it must be your fault for having Type 1 diabetes – because ‘you ate too many sweets’ has to be one of the biggest misconceptions of them all. There is so much in the news nowadays about ‘diabetes’ when what people actually mean is Type TWO diabetes. I am not saying that Type 2 diabetes is always ‘self inflicted’ – it most definitely is not, but IT ISN’T THE SAME THING!!! There is nothing that people with Type 1 did or didn’t do that caused them to get diabetes. They had no more choice in getting Type 1 than you had in choosing your eye colour, your shoe size or your preference for dark chocolate over milk chocolate. It is NOT their fault!

Myth Number Two: people with Type 1 diabetes can’t eat anything sweet or sugary. NO! Nobody, with or without diabetes, should be eating or drinking lots of sweet, sugary food/beverages – but it is ok to have a sweet treat now and then. The difference is that people with Type 1 diabetes will need to adjust the amount of insulin required to cope with the extra glucose in their blood stream.

Myth Number Three: people with Type 1 diabetes mustn’t do too much exercise. NO! Everyone should stay fit and active, as much as they possibly can. Having Type 1 diabetes does not stop many, many people from living very active lives and taking part in many different sports. It will always be a challenge calculating their food intake and insulin requirements, and will probably involve more checking of blood glucose levels but it is perfectly possible to lead an active, sporty life with Type 1 diabetes. Diabetes UK has some great advice here about managing carbs and insulin when exercising.

Ben Coker – and his kit!
(Image from Daily Mail)

Muhammad Ali is a British boxer with Type 1 diabetes. In 2018 he became the first boxer with Type 1 to gain a licence from the British Boxing Board of Control. Rugby international Henry Slade, and footballer Ben Coker both have Type 1 – and it hasn’t put them off a professional sporting life!

Myth Number Four: insulin is a cure. NO! Insulin is a treatment – it’s not a cure! Without insulin people with Type 1 diabetes would die, simple as that. At the moment there is no cure for Type 1. Once those cells in the pancreas have gone – they’re gone for good. BUT there are lots of dedicated brilliant people working hard to find a cure for diabetes. You can help by donating to JDRF to help them support even more research projects. One day there WILL be a cure! My fundraising page is here.

November 14th is World Diabetes Day.

Help find a cure for Type 1 diabetes – donate to JDRF via my fundraising page!

Why am I running 12 half marathons in a year?

I feel that I’ve neglected to write much about the real reason WHY I am running a half marathon every month in 2019. There are lots of reasons, but one main one. I am raising money for a cause dear to my heart. I am running to raise money to help researchers FIND A CURE FOR TYPE ONE DIABETES!! I don’t have Type 1 myself, but people close to me do/did.

Type 1 diabetes is an autoimmune condition – it’s caused by the body essentially attacking its own cells, destroying the cells in the pancreas that produce insulin. This leads to a lifelong dependency on injected insulin. It’s what is nowadays termed a long term condition – what that means is that you have it forever. Right now there’s no cure.

One from earlier this year! I loved this run down in Surrey.

When I started writing this blog one of the aims was to raise awareness of what Type One Diabetes is all about. In this I feel I have somewhat failed. I have been sidetracked by cake. And running. Partly this is because I find them easy to write about. Partly it is because I sometimes feel a bit helpless writing about a condition that I don’t have.

Sometimes I actually stop running, and walk instead! In June my friend Michelle and I walked half of the South Downs Way to Eastbourne.

In this post I’m going to point you to just a couple of the great blogs and amazing people out in the Type 1 world. They can enlighten you much better than I can to what it means to have a condition where you are constantly thinking about what you eat, what your blood glucose level is, and what you are going to do in terms of injecting insulin to keep yourself going.

Not only do these amazing people have Type 1, they have demanding jobs AND they manage to write blogs, do podcasts, walk several thousand miles, raising awareness and money along the way.

Recently I listened to a super podcast by the inimitable Miss Jen Grieves, talking to a fellow Type Oner Peter Davies who has had Type 1 since 1958. He spoke about the ‘old days’ of testing sugar in urine using a mini chemistry kit, that only told you approximately what your blood glucose was 4 hours ago. He also talked about the injecting apparatus – re-using and re-sharpening hypodermic needles! Can you believe it? Well I can. Although I don’t remember my dad actually sharpening his needles I certainly remember him re-using them, and storing them in surgical spirits.

My two best sons! They like running, and supporting JDRF too.

Jen Grieves has a wonderful blog, and now several brilliant podcasts. If you are not sure about what living with Type 1 is like, and you don’t know anyone to ask, have a listen to her podcasts – I promise you will learn a lot. I am certainly learning a lot!

Another person I found on social media (Instagram) is Eliza Bartlett. Eliza is an Australian cricketer. She walked over 4,000 miles from southern Italy to Aberdeen in Scotland earlier this year to raise money for JDRF Australia. She did this on her own for virtually the whole way. She has Type 1, and I simply cannot imagine how difficult it must have been to manage her diet and insulin while walking all that way through different countries. She also managed to plan her route to take in several cricket matches, and even played some golf! It was an incredible, inspiring achievement that makes running a mere half marathon every month seem like peanuts! This article in The Cricketer is a great report of her journey.

If you are on Instagram search the hashtag #typeoneawareness. There are lots of people posting about their lives with Type One. If you want to understand just a little about what it’s like take a look.

Another great place to go is the JDRF website – chock full of information in easily understandable form. November is Diabetes Awareness Month. You may think you know about diabetes – but do you really know about Type One diabetes? Check out the quiz!

On Sunday I am running half marathon number 11, and I am really looking forward to it. I won’t have to worry about my blood glucose at the beginning of the run. I won’t have to worry about it half way through. I won’t have to worry about it at the end. Why?Because my pancreas will just deal with converting glucose and glycogen into energy as my muscles need it. I’m lucky. Let’s help JDRF fund the research that will find a cure for Type One.

Please consider donating to my fund raising page here. And a BIG thank you to those friends and family who already have!

Final selfie – also on a walk in Cornwall. I love this coast path, and walked and ran some of it earlier this year.

Testing, testing Part 2

In Testing, testing Part 1 I wrote that part 2 would include a contribution from a young person in Kenya. This blog is about raising awareness, and that includes me. I have been inspired by a young man called Joseph who lives in Kenya to learn more about the challenges facing those across the world who live with Type 1 diabetes. The sobering reality is that if you have Type 1 in many parts of the world you face enormous difficulties.

First I would like to introduce Joseph. He is thirteen years old and lives with his family in a village called Vipingo in Kenya. He attends school there at the Future Hope Montessori School where he enjoys a a varied curriculum including sport. Joseph is a smart and cheerful young man who likes reading and playing football. He has been living with Type 1 diabetes for 5 years. Joseph relies on blood testing strips to check his blood glucose several times a day. Unfortunately in Kenya, as in many places in the world, these are not provided free as they are in the UK. One month’s supply costs about £40. Joseph attends the Kemri Centre in Kilifi Hospital monthly for check ups and to pick up his supplies of insulin and testing strips. When Joseph turned thirteen he was no longer eligible for free supplies to manage his diabetes. Now the school buys everything. Joseph’s family are not able to afford it. This is how I first heard about Joseph. A friend of ours helps manage the charity that runs the school, and appealed to people for someone to sponsor the testing strips. The family and the school health officer had tried to ‘ration’ the blood tests each day, but this led to blood sugars running too high or too low, and Joseph ended up in hospital for 2 weeks.

Some of the children at the school in Vipingo, Kenya
(Photo courtesy of Vipingovillagefund.org)
https://m.facebook.com/VipingoVillageFund/

Of course Joseph is one of many in Kenya with Type 1 diabetes. According to the charity Type 1 International full diabetes management in Kenya can cost $120 (US) and the average monthly salary is $216. In other countries around the world the percentage of average income can be as high as 82%. That leaves people with very difficult choices, including missing insulin doses. Of course many people won’t even have a choice – they simply will not have the money, like Joseph’s family.

It’s difficult to write this – but it’s important to realise that if you don’t manage Type 1 diabetes your life will be shortened. That’s the reality. And for many people around the world it’s not the lack of will to keep control of those d*mn blood sugars – it’s the lack of resources.

Reading the story of Cate on the Type 1 International website made me sad. She lived with diabetes for 30 years, and died of related complications before she was 40. In her life she advocated for people with Type 1 in Kenya – campaigning for better medical care and raising awareness at government level of the need for accessibility to screening, medical care and affordable supplies.

Cate, who worked to raise awareness of Type 1 diabetes in Kenya
(Photo credit Type 1 Diabetes International)

Other organisations also work in Kenya trying to improve the lives of children and adults with Type 1 (and their families who often have to work extra to afford the costs of insulin and testing kits). The World Diabetes Foundation has run projects for people directly affected, and healthcare workers to raise awareness and help manage the condition more effectively. The projects include camps for children and their parents. I think this is so important. One of the themes that has emerged from Joseph and Cate’s stories is the sense of ‘otherness’ experienced by them, and wanting to be like the other children. It’s like that wherever you are in the world, but how much harder to deal with in a country where, in the words of the World Diabetes Foundation:

poverty, stigmatisation, ignorance, myths and poor access to quality treatment often add to the difficulties people with the condition face.

I don’t want to end this piece on a downer. Although I do want readers to take away a sense of the enormous disparity in health care across the world.

All the children at Future Hope School in Vipingo
(photo courtesy of the school website)

Good news: Joseph can now test his blood glucose whenever he needs to because he has a sponsor. There are many, many people across the world who are working to raise awareness at an individual level as well as campaigning for international government action to provide better access to medicines and kit to help people manage their Type 1 the best they possibly can.

I have reproduced this lovely letter from Joseph with his permission. I am so happy that we can help him to manage his diabetes. Be proud of who you are Joseph! You can do anything you want in life!

Thank you for reading. I’m raising money for research into Type 1 diabetes here – thanks for your generosity.

Testing, testing Part 1

My intention when starting this blog was mainly to have fun, partly to create a diary of my runs in 2019, partly to raise more money for JDRF, and last but certainly not least – to raise awareness of Type 1 diabetes. So many people have no idea (or the wrong idea) about Type 1 diabetes. This post is all about testing your blood glucose.

When you have Type 1 diabetes you need to test the level of glucose in your blood regularly through the day, and sometimes the night. I’ve written before about how insulin regulates the levels of glucose in the blood. But if you are dependent on injections of insulin then you have to do the monitoring yourself.

In the old days this was done in a very crude way – there were no home blood test available, they were only done in hospitals. People with Type 1 relied on urine tests – if your blood glucose is high glucose and ketones appear in urine. This is how I remember my dad testing his glucose at home decades ago. The test strips would change colour according to how much sugar was in the urine. But it is not accurate, and it is not reliable. Glucose will only be detectable at quantities above 10mmol/L which is already well above the recommended range.

Then home blood test kits became available requiring a finger prick to produce a drop of blood. A small strip of special test paper is soaked in the blood and which is inserted into a handheld machine to produce a reading .

Finger prick blood testing – thousands of times a year

Although this is better than the urine ‘dipstick ‘ method it has its drawbacks. The machine needs to be regularly re-calibrated; you need a constant supply of test strips; and you need to be constantly pricking your finger – not much fun. But this is how most people in the UK and across the world have to test their blood glucose. Remember – there are thousands of children (and adults) doing this many times every day.

Now we have the Continual Glucose Monitor (CGM) which attaches to your skin, maybe on your tummy, your arm or leg. My favourite Type 1 blogger/vlogger Miss Jen Grieves talks about hers here. CGM’s are life changing because they mean you can check your blood sugar anytime, anywhere without having to do a finger prick test. In the UK it is not available to everyone because NICE guidelines are evidence based and currently the evidence does not show a benefit (in terms of glucose control) except in certain cases. In the USA it is much more common for people to have a CGM – IF they have health insurance that covers them. A big if, because many people in the USA do not have this level of health insurance.

The CGM sits on the skin with a sensor inserted into your body to monitor the level of glucose in the blood

My friend and colleague Helen got a CGM last year. I asked her to write something about it. She wrote the following:

” Diabetes; Greek translation “siphon” Ancient physicians would ask ailing patients to urinate in the sand…if the ants were attracted to the sugar laden urine, then diabetes was identified.
Thankfully we have advanced. Now we have “flash” technology.
I wear a small disc inserted in my arm. When I want to check my sugar level, I simply swipe my disc with my mobile phone.
Whilst I am not old enough to have been diagnosed with Type 1 diabetes in ancient Rome – I have been diabetic for 30 years, and have used a range of devices to measure my blood glucose – constantly pricking finger tips (and ear lobes!) to measure blood glucose. Machines which did not work in the cold, or the heat, or with low batteries, or without calibration, etc.
Whilst being diabetic is stressful in itself – being in a situation when you really need to know your blood glucose, is for me, the most stressful aspect.
So whilst the artificial pancreas is a while away- for now, I am delighted with the advances that flash technology has made to my life. I may not always like my blood glucose readings but at least I know….in a flash.”

Insulin pump – this means that you don’t have to inject insulin manually – the pump does it directly

Most people use an insulin ‘pen’ to administer their insulin. Some people have a pump which you can programme to provide the insulin for you. You still need to do blood tests, and you still need to calculate your insulin. They have been shown to help with better blood glucose control, but they are not available for everyone. And may not be suitable for everyone.

The next advance in technology to support people with Type 1 diabetes is a CGM and a pump that can ‘speak’ to each other – in effect the CGM ‘tells’ the pump how much insulin to release into the blood stream. Known as an artificial pancreas or closed loop system this provides greater freedom for the person.

I asked my sister Charlotte to write something about having a CGM and an insulin pump in a closed loop system. This is truly ground breaking and is not available to everyone as research is on-going. The following paragraphs are what she wrote:

“Over the last few years I have done on average 6 blood tests every single day which means over the course of a year somewhere in the range of 2,000. So, since the mid 1980s, when home blood glucose testing became available to the public, I have done somewhere in the region of 70,000 blood tests! Eeek!

However, the good news is, I rarely do blood tests now – ever since I started using a Dexcom G6 continuous glucose monitor (CGM). The CGM is a small device which is attached to my body, usually on my tummy, but can also be attached to the back of the upper arm. The results are transmitted continuously to an app on my cell phone and show movement up and down, and also alert me to any highs and lows. The great thing about the Dexcom G6 is that it doesn’t even need to be calibrated unlike earlier models – so no need for a manual blood test.

As if this wasn’t amazing enough, I am currently taking part in a research study of the new “artificial pancreas” at Mount Sinai Hospital in NYC. This means that every 5 minutes my CGM transmits my blood glucose directly to my insulin pump which can then make decisions on its own about how much insulin I need, and can either shut it off altogether if my BG is going low, or can add extra if it appears to be going too high.

I feel very fortunate, as the CGM alone made my life so much easier, but now combined with my insulin pump, the “artificial pancreas” has completely changed my life!

After nearly 44 years of living with and trying to control my diabetes, I finally feel like I am not having to work alone to be the “over achiever” that I like to be! I have always been someone who wants to be within my target ranges and now my “artificial pancreas” has taken over a lot of the work for me. Now I just have to learn to trust that it will do its job, something that is getting easier by the day, as the results I’m seeing are amazing.”

What everyone really wants is a CURE for Type 1 diabetes. But in the meantime we need better ways of managing control of blood glucose. Better in terms of keeping it in the right range to prevent complications such as blindness or kidney failure. And better in terms of quality of life for people – eventually constant pin prick blood tests and injections will be a thing of the past, and the artificial pancreas will (hopefully) be available for all who need/want it.

A big thank you to Helen and Charlotte who contributed their experiences. Testing Testing Part 2 will include contributions from a young person with Type 1 in Kenya.

Thank you for reading this post. If you would like to help JDRF fund research into a cure for Type 1, or research into better ways of managing it please follow this link to my fundraising page. Thank you to all who have donated already.