#360Mentor is a continuation of the #40DayMentor series. In this episode, Robert Kabushenga (RK) speaks to Jackie Namara Rukare (JN) on Raising a Diabetic Child

RK: It is my great pleasure to have you on #360Mentor, Jackie.

JN: Thank you for inviting me, Robert.

RK: First of all, what is diabetes?

JN: Diabetes is a disease where you are either not able to utilise your insulin or you have no insulin at all in the body. Insulin is the key that unlocks the padlock of glucose in the body. If you don’t have insulin or it’s not working well; you can imagine if you have a padlock and the padlock is rusty. Even if you have the key, the padlock cannot open. Without getting too technical, there are cells in your pancreas called bitter cells that are responsible for the production of the hormone called insulin.

RK: What does insulin do?

JN: It helps to unlock blood sugar or blood glucose so it can go to where it’s needed to do the work in the body. From the brain to the tips of your toes, you need glucose. Without that glucose, the cells can’t do any work.

RK: Why is diabetes perceived or referred to as a lifestyle disease?

JN: There are several types of diabetes but I will stick to the common ones. There is a type called gestational diabetes. There are some ladies when they are pregnant, they develop diabetes. But after giving birth, they go back to their normal state. However, if you have gestational diabetes when you are pregnant, you have a higher risk of developing type 2 diabetes later on in life which means you have to keep monitoring and making sure that you don’t get it. Type 2 diabetes is the most common. Primarily it is seen in advanced adults and that is the one called a lifestyle disease. But even then it is not a lifestyle disease entirely. There are other factors. It is a combination of not eating the right food and not doing enough exercise. These are the things that will bring about type 2 diabetes. But type 2 is like a twin of high blood pressure. If you have high blood pressure, know that diabetes is following closely behind.

RK: Really?

JN: Think about it, most people who are hypertensive also have diabetes. There is a thing called insulin resistance. Once you have insulin resistance, it affects so many other parts of your body. And high blood pressure is one of the outcomes of not being able to use the  insulin. Doctors will give a more detailed explanation.

Disclaimer: I am not a doctor. I have just learnt these things along the way.

Then we have type 1 diabetes primarily found in children and young adults. And it is believed to be an autoimmune disorder. So what happens is that you cannot make any insulin in your body at all. So it has to come through an external source like an injection or through an insulin pump. And in type 1 diabetes, the science tells us that for some reason, the body turns against the bitter cells that make the insulin and destroys them. I still don’t know why. There is still a lot of research going on in this area. But that is the scientific explanation we get on how you develop type 1 diabetes.

Yes, there is influence from your genealogy if you have people in your family who have diabetes. Which means there’s a predisposition but you can have a family where no one has it in the family. There are instances like where you have lost a baby and your pancreas was damaged or you have another chronic disease which impacts the functioning of your pancreas and that’s how you acquire type 1 diabetes. But it’s more common in children and young adults.

RK: You know I had a very interesting conversation with one of the doctors that was managing the covid situation. They initially thought that diabetes had underlying conditions and therefore covid would take them out or they would be vulnerable but later on, they discovered that the virus can go into the pancreas even if you don’t have diabetes or if you are a borderline case and it just messes up your entire functionality and even kill you. Quite a few people in the early stages were killed like that.

Which brings me now to your story. How did you arrive at this intimate interaction with diabetes and you acquiring all this experience?

JN: About 13 years ago. I got a phone call from home and I was told our son David was acting in a strange manner. He was about one and a half years old at the time. You can imagine that is the time when kids are really active. I got a phone call and they told me he was lying on the floor and didn’t want anyone to touch him and that did not sound right. So I ran home and took him to one of the clinics where we did tests. The typical tests you do; malaria, bacterial infection and everything came back clean. We went back home and thought he would be okay. Maybe the lab we were using was not a fully fledged lab. I call myself a doctor by association. My dad is a doctor, one of my brothers is, and my sister in law, Christine is also a doctor. I called my dad and told him about the tests, can you write me a script so we can do a comprehensive test. I got the script and went to a bigger lab, did the same tests and the results were the same. Nothing.

But in all this process we were not able to do a urine test. At that point he is in diapers and you have to negotiate for a sample. That happens over the weekend, Monday I go to work. Monday afternoon I got a phone call that he is doing the same thing. It occurred to me that there was something mysterious. So we went to the Surgery when it was still on Acacia Avenue and I carried all my lab results and I showed them. I told them there was something wrong with this young man and I was not living without establishing what it was. So, they looked through the script and realised there was no urine test. They were able to get  a sample and there is sugar in the urine and a product called kiton, a by-product of your insulin not working well. The numbers were all through the roof. So after that, they did a blood test. And the nurse came back about three times. She was reading the results and was confused. Most meters have a minimum scale, most of them stop like at 33. When your sugars are beyond that level, you just see the letters HI which means it is so high, it cannot be measured. She kept getting that high reading three times. Every time she would come back with a different glucometer. Then I saw pandemonium. All of a sudden the doctors were running around and I was wondering what was happening. At this point, no one was saying a thing. Then they told me they needed to put him on a drip. It took like six of us to hold him down to find the veins. Through the drip they started administering insulin and bringing the sugar levels down.

After an hour or so, he had stabilised and Dr Stockly called me into the room and he told me; “your son has diabetes.” I was shocked.

RK: You thought it was some kind of cruel joke or something.

JN: Diabetes? In a toddler? At that point we didn’t know any children who had diabetes. I thought the doctor was high on something. He saw the disbelief on my face. So he told me, “fortunately for you, we have Dr Martin Nsubuga, he is a senior consultant in Nsambya but he comes and attends clinic days and today happens to be that day. You will see him in the afternoon. But we are admitting the boy. So I called Don, my husband and told him that they had just found Daudi with diabetes. Eventually we talked to Dr Nsubuga who confirmed the diagnosis. But at that point I was still in disbelief. There’s no way my child was having this. I don’t know what they were seeing but it the wrong thing.  So we spent the night there.

RK: Meanwhile, he is still on drip?

JN: Yes, they were still adding insulin and balancing the levels. By that time, we had called all the doctors we knew. Fortunately, my dad used to teach anatomy at medical school, there are quite a number of doctors he has taught so we now rely on his network. So we ask, who of your students specialised in endocrine disorders. So we start to get various opinions. Once we had been discharged, we went to the medical school paediatric department and met with a couple of doctors who took our results and like everywhere else we went, they were confirming the diagnosis. There was no more doubt until we ended up at Dr Silver Bahendeka’s. He told us to calm down. There were thousands of kids with this condition and it’s manageable. It was important that we got that first step of counselling. It helped us to get acceptance quicker. We would have spent a lot of time trying to prove that the child didn’t have diabetes yet he had it. He took us through the regimen of what we needed to do. The diet and all that. Meanwhile it is a surreal experience. One of the memories in my mind is that once we got that initial diagnosis at the Surgery, if you remember the old location, there was a nursing section at the back of the sitting area, so they sat me down and counselled me. Then they told me I had to learn how to do these things. They brought out the kits and told me I had to learn to take the glucose readings and learn how to give the injections. For the blood test, I had to test myself  to understand what is involved. To administer the injection, she gave me an injection and a syringe. I had to practise drawing water and injecting the orange. It was a crash course on the two things.

Then we came home but remember this is not someone who can articulate to you his feelings. We had to rely a lot on observation and testing to find out his glucose levels. That’s how we found out in that initial stage.

RK: Tell me something, what was going on in your mind when you got this news. What questions were running through your mind?

JN: Of course the first one was why our child? Of all the things that could happen to him, why diabetes. Until then he had a carefree existence. And now all of a sudden we are pricking and prodding. Everytime he would be looking at us with this look of “what have I done? You’re pricking me left, right and centre.” I must say I have total respect for Daudi. At that age, to take it in his stride and say okay now this is what is happening. We had to explain to him that this is medicine. Fortunately, by the time we left Dr Bahendeka, he told us the injection is more intimidating, we could use the insulin pen which is less painful and get him involved in the process. That way, he could see it as something normal. But of course you are in shock, you are frustrated, you’re angry.  But you have to go through all these emotions before you can accept that this is the new normal. There are other people. There are other children with this similar problem. Other parents too have managed. Besides we are lucky, we have access to supplies.

RK: A lot of parents have to confront situations involving their children that they didn’t expect. At what point did you reach this point of acceptance?

JN: I think the first three months we were on autopilot. This is what we have to deal with. We had to agree to it and learn how to provide the necessary care. But we soon realised we can’t manage this thing on our own. So at least, we explained to the immediate circle of friends and asked for their support. We were fortunate that our immediate circle of  friends and family are all understanding. They ask how to help and we have always had their support. If you don’t have that kind of support, you may struggle a lot. At a certain point you can burn out. There is a thing called the caregiver burnout. Diabetes in particular is an unrelenting situation. You have to deal with it 24/7.  You can’t relax. There is no day off. Goes on year round. The first couple of months were hectic. Fortunately for me at work, I had an understanding boss, Philip Odera. I was at Stanbic Bank and to this day I am eternally grateful to him. If I had not had his support, perhaps I would have quit work because there are so many things you are learning and so much information you are absorbing. And because he was really young at that point, we were directly involved in administering the care. It is not like he is able to do most of the things himself. It was really tight. Kudos to the marketing team I worked with at the time Sonia Karamaji, Pamela Opoka, Emmanuel Masaba, Eunice Amang, Daniel Nsimbambi … all those guys made my life easy at the office. Because there were days I had to leave early and or come in a bit late, I was able to get a really flexible work arrangement. Remember this is the marketing department, you are the ones who are usually up and about on behalf of the company. I had to take a step back. For about a year, I had to step back from a lot of those engagements that required me to be visible because we were all adjusting as a family. We needed that space and you do need your employers to support you in this journey. It becomes really hard. And diabetes is really an expensive disease. There are programs which can provide subsidised consumables like insulin itself, the testing strips for urine, for testing ketones. But not everybody gets that. If you are paying the full commercial rate, it’s not cheap.

RK: So there is a cost in doing this and that in itself, like you say, it is prohibitive. Does this stuff come under insurance or it is on you?

JN: It depends on what sort of insurance case cover you have. When I was at Stanbic, all the people at Liberty Insurance knew me because you know me, I will not go quietly into the night. We had to have some candid questions. Most insurance plans are sort of a tied structure. They are based on the premium you want to pay. You could have a basic package, something in the middle and then a premium package. And for each of those packages, usually maybe the middle and premium one, they will have something called a chronic care program. So if you have a chronic condition like diabetes, hypertension or cancer and HIV, then there is an assortment of a supplementary cover that is provided. My issue with what was provided for was that it wasn’t enough to give you the basics to do diabetes care and management.

What typically happens is that you have to go and visit your endocrinologist at least once a month because you are tracking your numbers. And as the child grows and your weight changes, you have to adjust your levels accordingly. Then you have to factor in the things you use. The testing kits and the insulin. And there is a specific test that checks how well you are managing blood glucose. So when you take it, it looks at the last 90 days and it tells you whether you did a good job or not. In the chronic care program, this test was not available. And I had to challenge them. I thought instead of saying it is not available, you would rather include it at an extra cost or add it to the package. We have always had this conversation on what constitutes a basic cover. If honestly we are to go by the book, for us in Uganda we are short changed. We were fortunate enough when we were first diagnosed we established a relationship with a lady called Dr Martha based in the UK. When we got that consultation, we established how much we were not getting in our current system. We made the appointment to see her. At the time David was diagnosed, there was no paediatric endocrinologist in the country. We now have over seven who have been trained over the years.

With her, she organised for us to have a meeting with a diabetes educator and a nutritionist. That is what we are missing in uganda. Here, you will see the doctor but that is it. And also you are supposed to see a psychologist because diabetes can mess up your mental health.

The conversations with the insurance companies was why can’t you guys give us the same level of service. They do the numbers and give us the amount. That is better than telling us that the cover is fixed. There isn’t enough in what it covers. And because diabetes is unforgiving in terms of complications, if you don’t manage your complications well, your kidneys will get affected, your brian, your stomach, feet and you have to go and see the specialists that deal with those particular specialists. And those are additional services you would need over and above your insurance cover. I have traversed a number of insurance firms and I haven’t seen anybody who provides anything near enough to cover all those areas.

RK: I have a question for you; do you have a life? You are either at work or looking after the child. And there are all these finances to worry about, what is your life like?

JN: Now, it’s a bit more settled. Earlier it was challenging because all of  a sudden you have this person relying on you completely. And I must say we were very fortunate, maybe a couple of weeks before David was diagnosed, a very special lady called Rebecca entered our lives. Unlike in the common cases where someone will say they cannot handle the situation and leave. She embraced it and she is even more of the expert than us in terms of diabetes management and we have walked that journey with her. For me that was a crucial  part of our support. I would feel comfortable to go to her and only call her and she would give me the numbers. Without her, honestly, I would probably have to give up work. I can comfortably leave home and travel and not worry about how his care will be. I am aware that that is a unique situation, not everybody gets that. You may not have the life you want but there will be a semblance of life.

Because Daudi was diagnosed with diabetes, until he was about 7, you had to observe. He couldn’t clearly articulate to you the feeling. It was upon you to tell that he is feeling weird.

RK: In quite a few families, it strains the relationship between the two parents but also strains family relationships. There is prejudice, they say there is something wrong with the woman. In our family we don’t have this, have you met those circumstances?

JN: We see them all the time. It’s actually quite disheartening to see a child caught in between the middle of what is basically denial from the parents. Because the parents are stuck at that stage in the process. And so they will attribute it to all sorts of things like witchcraft. We have seen some children that are completely abandoned by their families. We have seen children who have died from neglect even when the support and care were available but there was no adult willing to step up to take on the job and raise the child. We really do not take it for granted.

For school we were fortunate because Daudi’s grandmother runs a nursery school. I think she was even over protective. More than us.

RK: That is what all grandparents  do.

JN: We were also living closer to the nursery school. When we moved to primary school we made sure that we inform the teachers and explain what diabetes is and looks like and these are the things to look out for. And in case of any challenge, Rebecca was only a call away. Nursery school was pretty easy.

But also my husband has been very supportive. We have been in the trenches tighter. And that is very important. As parents you may get lost in your world and forget about this little child. They say God can’t give you what you can’t handle.

RK: True. That is why an elephant has no whiskers and a cat has.

JN: Exactly. As a family unit we said we are going to be responsible to make sure that Daudi is healthy and go through what a healthy child goes through and remain true to that particular commitment.

We also knew of other parents and children going through something similar who had nowhere else to go. In 2009, we started a support group called Sugar cubes and basically we provide education and we provide advocacy work for kids and families living with diabetes. And starting that organisation allowed us to bring together families going through the same situation.

When you are in a situation where you have kindred spirits, it makes it easier to cope. You just have to make sure you arm yourself with the information you need from wherever it comes. Sometimes there are a lot of well intentioned friends and families who want to help you but are helping you with the wrong things. Everybody knows about herbal remedies for diabetes, they will send you a jerry can, some powder, a handkerchief that has been blessed by a certain healer… we got a full range of things from wellwishers. It’s all well intentioned. But you have to remember that at the end of the day, of all the recommendations, insulin is the tried and tested remedy for diabetes. You might get better glucose control with the alternative remedies but I strongly advise that before you take anything, first consult your doctor. Because for some of these things you don’t know how they were made or stored. If you take it, you could be causing another problem in the system. Some of them when they break down they may become toxins and turn into poison.

RK: As a parent, what does it take to accept?

JN: You have to go through the stages of grief. Because if you don’t first process it, the person who is suffering especially if it is a child, they cannot articulate, you are doing them more harm than good. And so the quicker you get through those stages, the better for your child.

It is not easy. We all process differently and at different times. But there is no shortcut, you have to go through the stages. You have to embrace it to the maximum. It is something which when ideally you have a functioning social network and family, those are some of the people who will help you manage that process. For us, I guess because we had doctors in the family, we were able to get through that period a lot quicker because they were able to explain to us what was happening, what to expect and people to call in an emergency.

I remember on one occasion, David passed out and he was slipping into a diabetic coma. I was alone at home with him. I had a particular kind of injection called a glucagon but I was terrified to administer it. I was afraid I could hit a nerve and cause more harm. I basically harassed my father and brother who I called to come and administer the injection until he regained consciousness. That was a relay scary moment.

Sometimes that kind of care is not available. The things we take for granted where you live, you need to find a place which is close to a clinic or hospital where you can get emergency care. You cannot live anywhere you want even though sometimes you might be forced to live beyond where you want. If he is at school, he needs to be somewhere where there is access to an emergency care facility in case something happens at school.

RK: How did you construct the bigger network that you talked of?

JN: I guess, I have become like a pastor. Any opportunity to speak about diabetes, is the one thing I will not say no to. The more people understand, the more people  get to know, the better it is. Then you start to build a community that understands how to support a community living with diabetes because we want them to live with positive lives. I am a woman on a mission. I will preach that gospel wherever I happen to be.

We also take advantage  of online communities. There are so many online groups that can provide support across the globe. Locally we have got our support group. We have whatsapp groups where we encourage people to  join us and we have these conversations. We have training seminars. We were also very fortunate that through Dr Silver Bahendeka he really opened the door for us especially on the clinical side of the disease. Wherever there was a conference even if we were the only non medical people in the room, he would always call us to talk about our experience. Such platforms open you up to other platforms.

We attend regional conferences. There’s the East African Diabetes Summit. There’s a whole range of diabetic summits and conferences that you can attend now. There is the World Diabetes Congress which goes on rotation across the world. It’s one of those things where you participate in one and it leads you to another. We began locally and now we are being invited to participate in other international spaces. In April this year WHO signed the Global Compact on Diabetes. We contributed to the content of that compact and that is something which was different. They wanted to hear from the people who live with the disease either as the patients or caregivers. We hope our government will buy in and sign as well. Currently we don’t have a diabetes policy  and that is a big challenge. Our neighbours have it already.

The building of networks is slow with one community at a time. Each time you are invited, you make new friends and add them to the other networks.

RK:  I want to go back to David, where is he now in terms of understanding his situation?

JN: He has accepted it. Of course there are good days and bad days, we too have them. He does his own blood glucose reading testing. He administers his own insulin injections. We are at a stage called supervised management. So you observe what he is doing but he is doing it himself. We look forward to a time of independent management where we don’t have to remind him to do things.

But he is fine. He is in school. We have made it our mission to make sure that he does not get a life different from other children. Diabetes should not be the thing that stops him from experiencing life. It’s just part and parcel of what his life is.

RK: What about stigma?

JN: There is definitely stigma. But I think we have faced more discrimination than stigma. Our approach for school, for every new class, we ask for permission to speak to the class about diabetes. And he explains. And part of that briefing, he tests. There are times he cannot leave the class to go and test, so we make sure we normalise those activities.

There is still a lot of work needed. But I guess the more we educate ourselves that this is what a person goes through on a day to day basis, those are normal and there is nothing  wrong with it. It’s a live or die situation if you make it hard for that person to administer care, they will actually die.

The other form of disrcimiantion is in the form of participation. He will be stopped from participating in sports because he has diabetes. Or he can’t go for a school trip. That’s where Rebecca becomes very instrumental, she will tag along for all his school trips for teachers to have a degree of comfort that there is someone who is going to be paying a certain degree of attention. Now he is able to travel alone with his tool kit including food.

The stigma is there, but we can counter it with education. Education takes away the myths and gives you the truths. And hopefully that will lower the stigma.

RK: As a child, has he had to grow up faster? There is no time to be a kid in such a situation.

JN: Sadly. He is a lot more grown up than kids his age because diabetes is 24/7, 365 days. You can’t go on holiday. You can’t go on a break. There are days when he is completely frustrated, when he just wants to enjoy life without measurements and calculations. Our role as parents is to remind him that for him to have a certain quality of life, he needs to take good care of himself because that is the only way you will get to enjoy life. But it is difficult for him to handle all that emotionally at that age.

RK: So how do you support him?

JN: There are occasions where we just let him be a child and I take it upon myself to remind him. He gets that kind of commercial break. With children, at the end of the day you have to remember that they are kids. There is a way they will still be kids anyway. Between Don and I, one has to play good cop bad cop. Because you also want to create an atmosphere of having someone he can go to when he is feeling frustrated. We can never truly understand because we are bystanders in the process.

One of the things they taught us is to do something called “a day in the life of.” Test yourself, inject yourself and get to experience what he is going through. Sometimes we forget and blame but hang on a minute this person is still technically a child. I have to put myself in his shoes. I need to understand what he goes through on a day to day basis. We still have some years to go before he can be legally an adult and they say a child is still a child in the eyes of a parent even if you are 50 years old. It is a process of adjusting  and learning. Every child is different. What works for one child may not work for another.

We need to normalise asking for help. There is this thing people keep saying “mugume”,   “muhame”

RK: ‘Buli omu agumye mune’. But you see you get to a point where you can tell you’ve been there and done that, what else can we do? And it helps to talk to somebody who is not in that situation to help put things in perspective. For me, the penny dropped about the time when Daudi was diagnosed with diabetes. We had a friend whose child was diagnosed with leukaemia. And I stopped whining about a lot of things.

RK: That is the famous statement: I thought I had no shoes until I found a man without a foot.

JN: Anhaaa. When I saw what she was going through and trying everything and eventually losing her daughter, I realised I had to stop complaining. I realized that what Daudi had was nothing. There was a tool for him to use every day.

RK: So meeting other people whose children have different experiences helps you, doesn’t it?

JN: Yes definitely. They say, there is nothing like other people’s problems to put you in place. Because you always think yours are the worst until you find someone else who is worse.

 RK: Jackie, I guess diabetes is about the medical as it is about the nutrition and the exercise, tell me what you have done in that department.

JN: One of the things we tried to do from the onset. Maybe I’m lazy but we agreed that we shall all be having the same meal in the house. We didn’t want him to feel like he was missing out on so many things and fortunately, the science says in terms of diet particularly for children, the strict restriction does not show a significant difference from the people who have had a more natural diet. What is now emphasised is portions. The type of food, portion control. We have guidelines. You can pretty much eat what you want but you must be mindful of the portions and how you cook it. For example, if you deep fry cassava, it doubles your carbohydrate content. It is advised to eat the roasted or boiled one. We just do portion control, especially of the carbohydrates we take in. For diet, we said we shall just eat what he eats.

For exercise, he loves all sorts of sports. Lately, he is into football and swimming. Exercise hasn’t been a challenge. In diabetes we talk about the tri factor, between insulin, diet and exercise, you pretty much manage the diabetes.

IIvan Okoth: I was diagnosed with diabetes at the age of 11. One thing diabetes takes away from you is that you are not working at the same level as everyone else. You have to contend with low sugars. We call them hypos and you have to contend with high sugars. It’s a very delicate balancing act. Sometimes it is just frustrating.

JN: What Ivan is talking about here is real. The ground is not levelled. When you are living with diabetes there are certain things that go on in your body that don’t go on in other people’s bodies. And sometimes it’s hard for people to understand. We must give kudos to the organisations that help diabetes patients. There are various programs running that are giving the much needed help. It’s a drop in the ocean, we need so much more. Covid made the inefficiencies of our situation more glaring. Covid impacted livelihoods. Already a family is struggling and then all of a sudden you look at income and you have to make a decision, are we going to buy food or insulin. There was no access where the CDIC allows you to get your supplies.

RK: But Jackie, what kind of choice is that?

JN: A really bad choice.

RK: There is no choice. food and medicine, I can’t contemplate it!

JN: There were some cases where one of the doctors we work with had stories. You could mobilise to raise food but then cooking oil would be missing. When the lockdown happened, we had a situation where a primary caregiver; a mother, was cut off from her child. She was alone at home. Fortunately, the neighbour was helpful. The one thing you have to remember is that with the support of friends, relatives and community you have to teach everyone around you what to do when there is a hypo or a hyper because sometimes those symptoms resemble each other but the treatment is different. In a hypo state, it means the sugars have dropped so low. In a hyper state, it means the sugars have gone so high. In a hypo, you need something sugary to raise the blood sugars. In a hyper, you need insulin. But also you should know how much insulin. It’s  a case of life and death.

RK: I have no words. The pressure on your parents is huge. We must applaud the parents who do whatever they can. It’s not easy but you have to get through.

Donald Rukare: It is a real challenge. David had a major surgery about four years ago. That was a whole session. We went in for a simple procedure. An appendicitis, it was a two day event and we would be out. We had to agree on whether to do it or not. He came out and over the weekend things went south. He had to be taken back for a full surgery. It was an intense three weeks. Even the things we take for granted like passing gas, we spent nine days just waiting for that. That is one indicator that the stomach is working. But definitely what Jackie was saying is that during such cases, sugar levels have to be monitored. The ordinary treatment regimen for an ordinary person is different from that of a diabetic. We had to be alert 24/7 to make sure that whatever they were putting in was very controlled. It didn’t have sugars.

JN: It’s one of those things that are scary.

Joel Kyabby: Some of the things you mentioned are hard to come by, what would you suggest for someone who may not be able to afford some of these suggestions?

JN: I hear you, Joel. One of the things we have been advocating for is a social marketing program for diabetes. One is for people who cannot afford to buy the supplies, there is a middle tier for people who can pay a subsidised rate and the people who can pay the full amount.

In North America, when they expanded access to insulin, they were able to get more positive results. There were reduced deaths and reduced cases of insulin. When you provide the care, it saves money as opposed to having to deal with consequences of not taking the action earlier. Unfortunately we don’t have a structured way yet. So far the service is available at Nsambya hospital.

The challenge we see is that parents tend to hold back as children grow up. There is no easy answer now but there are many things in the pipeline.

RK: Jackie, thank you very much for setting aside time to share your very personal experience. It is not easy for people to open up and be vulnerable in these circumstances. Thank you very much.

JN: Thank you Robert for giving us the platform. I hope you are now converts to go and preach the gospel of diabetes.