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.

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)

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.

Letter from Joseph

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.