Mercy Chelang’at and Phillip Langat Transcript — Nov. 18, 2025

Rachel Jones/NPF (00:00:00):

For our next session we’ll explore the issue of mental health challenges for people living with rare disease and their families. First we’re joined by Mercy Chelang’at, an investigative health and science reporter for Nation Media Group based in Nairobi, Kenya. Back in July of this year, mercy produced a compelling feature story about a family that lost four members to motor neuron disease, which attacks the motor neurons in the brain that controlled muscles. Mercy joins us today to talk about that story and about her strategies for covering health and science issues, and we’re also joined by Phillip Langat. He’s a member of the family that endured the profound tragedy of losing four members to rare disease. Phillip is the founder and chairperson of the Motor Neuron Disease Association of Kenya, and his advocacy and collaborations address the major gaps in diagnosis, psychological support and care pathways in Kenya and throughout Africa. Thank you both for joining us today. But before we hear from Mercy and Phillip, I would like to share a video message from Samuel Agyei Wiafe. Samuel is a clinical psychologist based in Accra, Ghana, but today he is trapped at an airport in the Philippines trying to get back Tora. But Samuel was gracious enough to share a video of talking about his journey as a clinical psychologist who has encountered rare disease families, but also about why he founded something called the Rare Disease Ghana Initiative. So Syd, if you would queue up that video and we’ll hear just a snippet of Samuel’s Journey.

Samuel Agyei Wiafe/Rare Disease Ghana Initiative (00:02:12):

2016, I came across a family who lived with an unknown syndrome. They have four children and they all seem to have some neurodevelopment.

Rachel Jones/NPF (00:02:27):

Is it sound OK?

Samuel Agyei Wiafe/Rare Disease Ghana Initiative (00:02:29):

Challenges?

Rachel Jones/NPF (00:02:30):

OK.

Samuel Agyei Wiafe/Rare Disease Ghana Initiative (00:02:32):

For me, what strike me is the mental health impact that this family we’re going through, the trauma, the stress, the anxiety, the delusions, and many, many comorbid mental situation. It was a difficult and traumatizing situation to witness as a professional and I quickly realized that it wasn’t like my everyday patient that I see who to maybe going through some challenges, but this was a very unique situation which required a lot of actors to take action. It requires an entire health system, health and social system change to be able to mitigate and help resolve some of these challenges that this family were going through.

(00:03:45):

First of all, the family didn’t have a diagnosis but they knew there was something wrong. They had four children, all had some problem and nobody was able to give them answers. For me, I quickly understood that we need debt to have a system that is responsive not just to this family, but to many more families who lived with similar situation. Again, the condition that this family had presented more neurodevelopmental and neuropsychiatric and so the condition in themselves require a lot of mental health inputs in terms of its management. However, the systems for mental health is not so well developed. We have few centers that are able to provide mental health services and support to the citizens. Mental health is not a huge priority and the investment is very low. We are also confronted with stigma and services are not readily accessible and available to many patients

(00:05:11):

Within the country and across the country. Services are heavily dense and centered within the capital and urban areas. A few psychologists are available to see patients and so for me that was another layer because there’s already disparity in mental health access in terms of services, but this family is already vulnerable. Many people with red is already vulnerable and so they’re already facing their own challenges and access to healthcare and now they have to also face another layer of access to mental health services. They are dealing with stigma at multiple levels, stigma around the air condition, and they’re dealing with stigma also around mental health. And so it’s a more or less like a comorbid situation that these families have to deal with.

Rachel Jones/NPF (00:06:12):

Samuel does a terrific job of setting up the key challenges for families who are caregiving and certainly along with the challenges that the people who are living with rare disease themselves must deal with. So we are grateful for him for sharing that video with us. I want to go now to Mercy because as I’ve shared over the past few days, I have lived in East Africa for 10 years and so I got to know journalists like Mercy. I got to know many of the challenges that they have in storytelling, access to information, building their expertise as journalists. So Mercy, let’s go to you now. I know you’ve prepared a presentation for us, but before we get to it, tell me a little bit about your background and why health and science reporting is something that you were gravitated towards. I

Mercy Chelang’at/Nation Media Group (00:07:29):

Thank you Rachel for this opportunity. Good morning and good evening from where you are listening from. My name is Mai Langa. I am a health and science reporter for Nation Media Group Kenya, and my journey to being a health and science reporter actually started with me being a general news reporter for about three years before I was then moved to the health desk. So I have a friend, my best friend writes started with writing health and science when we both joined the company and she would tell me, Marcy, I think you have a gift of writing science. I think you should join our desk. I think you should try and write some stories. And I did write a number of stories so I would contribute to the health desk while I was still doing the general news reporting. And then I think it was in 2023 when the newsroom had some reorganization and they created hubs.

(00:08:35):

So we have the health hub, we have the politics hub, we have the sports hub, and now that is when I was officially taken into the health desk, and so it was the health and climate desk. So from then I would now do specifically health and climate stories. Now coming to the m and d story that involved Phillip, what happened was, again, because of my journalistic network, we have contacts in the PR field and whatnot. So the tip actually came from a friend of mine who is a corporate communications officer at AgCan Hospital where Phillip used to go or where his sibling was diagnosed and treated. So she reached out via email to say, mercy, hey, this is a case that we have. This is the story involving a caregiver who has lost five family members to m and d. We think this is a story that is worth telling. So I took it up from there. We scheduled an interview, we met, and now that was the beginning of the telling of the story about motor neuron disease.

Rachel Jones/NPF (00:09:53):

You offer so many critically important tips in that story in that a friend of a friend knew you were a journalist, had this information and reached out to you. I think what we need to remember is that the conversations that we have with people in our lives can often provide tremendous insights. So I’m going to ask you to stop there because we want to hear from Phillip.

Mercy Chelang’at/Nation Media Group (00:10:23):

You

Rachel Jones/NPF (00:10:24):

Have some valuable insights in your presentation, but now I want to turn to Phillip. Phillip, first of all, thank you so much for joining us. This is one of the major takeaways that I have as a journalist is how incredibly selfless and generous people can be in the face of heartbreaking challenges, difficult challenges, but their desire to share that information with other people is literally the fuel for us as journalists. So I want to take this opportunity before you start your presentation to thank you for joining us.

Phillip Langat/Motor Neuron Disease Association of Kenya (00:11:16):

My pleasure.

Rachel Jones/NPF (00:11:18):

So we’ve gotten the basic details about the fact that this is a rare disease that has been in your family now. So start your presentation and tell us your story please.

Phillip Langat/Motor Neuron Disease Association of Kenya (00:11:37):

My pressure if I can share is OK.

Rachel Jones/NPF (00:11:54):

Yes, we can see it.

Phillip Langat/Motor Neuron Disease Association of Kenya (00:11:55):

Yeah, yeah, yeah.

Rachel Jones/NPF (00:11:56):

Full screen, Phillip. Oh, there you go. OK. It looks good. Thank you. Yeah, thanks. Thanks. Is that at the end? We need to start at the

Phillip Langat/Motor Neuron Disease Association of Kenya (00:12:04):

Beginning, man. Technology got me happy. OK, fine. My pleasure. And I’m so, so grateful to appear in this workshop. My name is Phillip. Phillip. I come from because Rachel, Kenya. I come from C the Highlands of Kenya and I lived in Nairobi. I retired recently and I am coming here not as an expert in journalism or even medicine, but a man who has walked beside their disease in the shadows of my own family. So today I shared that this story that is painful. Yes, it’s very painful, but we’re also hopeful that we get solutions. A story of how the mind carries, the way a story of how the mind carries the weight in the body and not motor neuron disease as explained is a disease that it’s a neurological disorder that causes progressive degeneration of motor neurons and it’s feasible in, it shows up manifest up in the muscles, wasting of the muscles, loss of voice and even swallowing.

(00:13:36):

So that is what it is. And one thing is that globally it’s just like I’ve shown, there are new cases every day and every month, every year. And here in Kenya we don’t have much data and nobody cares because it’s a rare disease. So one student has gone through the data in hospital and gotten that about one 60 cases was seen in 13 years. Well, it might look small, but that’s one hospital which keeps records. Other hospitals also could be suffering, so could be having the same information, but nobody has. I’ve also tried to ask in the government, and they also ask me how many people are suffering like I’m a medical person or a journalist. So an interesting thing because I’m talking to journalists, I also research around and I found that there are also journalists that have been affected all over the world and those are some of them, Charlie Bird from Ireland, Sunman from Singapore, and all of them suffered, but they didn’t just do it like that.

(00:14:57):

They fought it also in many ways. So in my family reality, actually I would start by saying the first case we saw is was in 1987. An uncle of mine had just come from Germany. He was a student and he just got sick. And the final diagnosis was we were told it’s not a neuron disease, but what struck is that it was witchcraft. He was was bewitched because he was one of the few people that had studied. So we just took it silently like that. The next person that came was my brother and we also looked at it and knew that it was going to go in the shortest time and nothing much we did. But when things now escalated, I took charge. Like I’ve said, we were in my family, we are 10 members and then I looked at it probability of those who can be affected are nine except my mom who doesn’t carry the gene, what we call SOD.

(00:16:05):

So the potential is nine members out of nine three I’ve gotten affected. So I no longer say it’s no longer rare in our family, it’s there. So just a bit of bit is that my father suffered. I think he went, I was in Australia studying that time, but the conditions of when he was his last days of life showed the same, manifested the same symptoms of m and d. But my dad had what we call trigeminal neuralgia, a chronic pain condition that I’ve never seen, which is also nerve. It’s also very rare. I’ve never heard about it. And it could get severe shock, severe shock that you would not believe that it was going to survive. When I checking the books, the pain is even described as idiopathic, meaning the doctors have never even understood. My brother, Jonathan in 2 0 0 7, he was the first one to be affected by us and I’ve explained it well that when he saw it we knew he was going to die.

(00:17:20):

I tried because I’m the eldest and possibly somebody who has a bit of medicine, I’m a veterinarian. I looked for his drug and we got it because we had to import it. He used only three and passed on in our hands. And then years later, my brother and I, around 2020 after the COVID, it just developed weakness of the legs and I think he knew in him that he was going to cope because one day he was a duck when I was with him and he just cried and said, the disease I have, I don’t think I’ll survive. And that was the most thing I ever had in my life.

(00:18:04):

Me and him, we took our brother to hospital and he passed on in our hands. So with that, we knew he wasn’t going to live for long, but we worked it very hard with him with Akan Hospital and we did the most we could first of all to diagnose it well, and we got to know that it’s something called SOD. It’s a gene that mutates. And so we used that technology and we were told we want to live longer this and this is what we’re going to do. One of them is to have a pack in his stomach so that he can eat because he wasn’t going to eat anymore. And in case of failing of the breathing, we were to be near hospital so that he could have tracheostomy living in a pipe. So when those things came, I am so tired because we were told by the doctor that he has motor neuron disease and he left the two of us just there, the bed.

(00:19:15):

It was the most painful thing on earth, but we agreed we were going to work very hard and we learned, we read, read many books and we feel as that we could do much. So these conditions gradually impacted in our family as we witnessed their courage through pulse and pain and declining health. So that is what happened. Other members of the family showed the same condition and I can trace it to genealogy of one of our grandparents. So that is the way it has gone. Now to mention exactly what happens is that, and for your information as we were teaching those brothers of mine, we had to travel very far. Rachel, we know the ritual in Nairobi coming to see a doctor in Nairobi, it’s so stressful. So all those can bring us a lot of mental and emotional. Many people just we talk even when they were introducing themselves, I could tell this is from global South where things are a bit hard, it really hits first of all, the shock and fear of diagnosis.

(00:20:32):

Anytime you’re told you have that disease, it has a sweetening motor neuron disease. When you mention it, it looks so nice, but the way it manifests you so terrible. It brings a lot of anxiety, depression and constant uncertain. You don’t even know when you’re going to die. We took my brother, he was in an ICU, he stayed in an ICU for 300 days and we were very uncertain of the next day. He passed on when I was in Nairobi and he was in elderly seven hours drive. So there’s a lot of stigma also in isolation from people. People would say anything. You can imagine having lost all those people in a community in Africa, what they’d see, there’s emotional exhaustion that one cannot even be explained. And financial strain, I know many of you possibly would look at financial strain, but from a very practical point of view, there are times we would even work without having FA to use a bus to where we were staying and people had had to house us because we could not afford to rent a place because my brother was taken to ICU 300 kilometers away from our home, from chu to eldoret.

(00:21:52):

So that is exactly what happened. Now, one thing about mental health is that I’ve just thought of this. The body gets so weak, but the mind carries the heaviest weight. The mind really suffers. It’s not even the body. Other mental emotions which can be seen from the children, they have stressed differently. If I explain to you how my two brothers children are, you’ll not believe some have managed, but some have not. Their behavioral changes also strained relationship.

(00:22:34):

The people who remain behind would look at themselves as suffering are the people who also want to help them, but they don’t see it. So they’re giving guilt and fear. I carry a lot of guilt. Also, my brother told me to look for a drug that was clinical trial and there’s no way I didn’t go even including writing to the president of the Republic of Kenya, but we could not get it. So that guilt I still carry. And then the death, fear of death without dignity. He saw her bad. My brother was in a general ICU, he saw people dying every day but him, he told us never to be put in that box. So it was very, very hard. Family rules collapsed, limited mental health support, which is so bad in Kenya. Now a very interesting thing that possibly so special in global south is despite the sickness, we have cultural and social misconceptions.

(00:23:38):

The witchcraft, people think of witchcraft, people think of passes, ancestral punishment comes ahead of even science. We also relied much on prayer. People go praying. People travel and the moment they pray, they bring even oil and ointment oil and they believe that will work. So those are things that we call miracle consolidation. I know you would want anything to do to overcome this problem. So whoever came even with oil, understand that we still accept that. And then the worst thing mercy possibly understands or anybody from is a traditional medicine without proper diagnosis, the traditional healer would come with the same drug that he used in another home to bring it here for your information. My dad, when he was sick, he refused traditional medicine, but I flew to study in Australia. That’s the time they gave him the drug. And one day called me and told me my liver is so wasted because then I asked him how he said, the moment you left, I had liter and liter of traditional medicine that has now spoiled my liver.

(00:24:56):

Thank God my dad was a Christian and lived it was. So he also get stigma, silence, delayed care because it’s very hard to diagnose. And then we also tend to hide this illness. I’ve come out from the family to talk about this, but I am telling you I have people who are wondering what I’m doing, but I know if we don’t come out like this, we’ll never get treatment, especially in the global south in Africa and possibly in Kenya. So we don’t have to hide any illness but come out like Rachel said, I was willing, it’s my duty to tell the world that we need to solve this problem, especially from the global Saudi giving up. Medical care is very common because when you know you’re going to die, you look at the money you have and say, it’s better I die than to spare the money that you have.

(00:25:57):

But I can tell you every breath for somebody leaving matters. So in most cases I would call this one ignorance becoming the leader of you. Now the major challenge is generally from global, the government and everything is health systems. Like in Kenya, we are just suffering. There are no hospitals that can fit neurological patients because my brother was put in a general ICU that was so demoralizing and we could not even be allowed to be next region. One of the rights of somebody suffering with MO and neuro disease used to stay with somebody all the time because they can’t talk, they can’t do anything. It requires laugh. So it gentler care, financial pressure, that one, even now we’ve not survived. Insurance was exhausted. I had to move up and down. We spent a lot of money. I checked the other day. It’s around $7,000 that we had to pay and I had to pay because the hospital allowed me to carry my brother when he passed on without payment.

(00:27:08):

In Africa, possibly of the global north is that the health services are so organized, but in Kenya you cannot leave a hospital until you clear your fee. That is, but they allowed me. There are also cultural barriers like I’ve talked about. Emotional strain. That one goes without explanation. Information gap is the worst thing. That is one of the things I’m doing in this motor neuron disease association of Kenya to tell people about diagnosis, canceling national data. I’ve gone to many offices and I’ve got the same answer. This disease is there. Tell me how many people have suffered. Sometimes you’d even want to tell them that I wish you suffer this, but I would not want anybody to suffer out of this. So lack of guidance is another problem. Families fight the disease without clear support or direction. There are research gaps and research is not done in Africa. In fact, we get most of it now. I’ve been calling the researchers even to think about thinking about Africa. Now my apologies for that time. Let’s close. I want to call a new journalist. It’s an opportunity that I’ve gotten. Their disease stories are not rare, they’re hidden. Journalists must bring them to light. Please bring them to light boldly, consistently, especially in the global south, show emotional scars that the financial strain that we undergo all full wage is feasible, can goes to real health, can open please journalists.

(00:28:53):

One courageous story, one journalist who his lecture I got sick. It’s that book is called Tuesdays with Maori General. Can you look at that book? A student of that professor who got sick with motor neuro disease went to see him. He had done a mistake because he had told him be seeing me, but he only went to see him when he was sick. He wrote a book about Tuesdays, the only Tuesday you got to see Moori professor. And that book is the one that gave us hope. I’m also willing to share mine and write it about most of the journalists that I mentioned early. Then when they got sick, just used to talk about motor neuro disease. Some even like the Australian journalist, he wrote a book. No, the one from Singapore wrote a book to for all the sales, just for this search. Any money that comes out of their sum of it goes to research because this thing has never been research much.

(00:30:01):

And I call to researchers also, as you write research journalist, please write about places that there is no technical. I mean nothing happens like in Africa. If Africa, Carrie, the burden Africa must share the solution. So I stand by saying the greatest loss in is not about the voice. It’s not the voice. It is. It is being forgotten. It’s being forgotten. I carry these stories because they deserve like no darkness because I know there’s hope. I say there’s hope. That is my small story. I hope I’ve brought it well. Sorry for anything that came out of emotions. It’s very hard to talk about it. Thank you,

Rachel Jones/NPF (00:31:04):

Phillip. I am so moved and so touched by your story, but I think more importantly by the power of your clarity and your insights, I love that saying that a borrowed voice is still a voice and lend us your voice. There were so many parts of your presentation that were powerful, but that one to me really resonated. I want to leave some time for the journalist to ask you some questions. So we wanted to go now to mercy because her reporting was what led me to you and the moment I saw her post on LinkedIn about your story, I knew I wanted to have her involved. So Mercy, please share your presentation with us.

Mercy Chelang’at/Nation Media Group (00:32:06):

Please confirm that you can see it.

Sharon Muzaki | Nature Africa (00:32:09):

Yes,

Mercy Chelang’at/Nation Media Group (00:32:10):

Perfect. I think I had gone through the tip off and the why. So let’s just go straight to the preparation for when you are going to meet the family to do the story. So preparation is key. I always say that. So make sure that as you’re preparing, you do your homework and that means you do your homework medically and you do your research to get more information about the person that you’re going to be talking to. So the first point I have here is to understand the disease at a clinical level. This means you research about the disease, how it presents and the common misconceptions because then now this prepares your mind for what is coming if you’re going to be talking to. So there is a recent story that was actually published today. It’s a story about congenital. It’s a disease where the person who has it has very big nodules.

(00:33:21):

They look like tumors, very big ones on the belly and on their back and on their thighs. So the reason I say you understand the disease at a clinical level and how it presents is because then it prepares your mind for how this person looks like how your source looks like. You do not want to be caught looking, shocked and looking judgmental and behaving a certain type of way. So understand the disease that you’re going to be dealing with. The second one is to address the gaps. Assuming like me that a friend of yours or somebody from corporate communications reached out to you, then request for the contact of the family or your source and if possible give them a call. Let them brief you, give you just a brief about their story so then you know what to research. And then the third one is to schedule an interview as soon as you are able to because we have seen instances where the family is ready to do an interview and the reporter somewhat d dallies.

(00:34:34):

And then unfortunately either the patient falls ill again and you cannot access them or God forbid they lose their life. So schedule an interview as soon as you’re able to because your voice is what lends credence to the stories that are outside there. And then the fourth one, if they have a blog, I have seen many people actually, and it’s not even just about rare diseases, many people have been using social media to document their struggles to document the problems with the disease, the challenges that they’re facing to advocate for others. If you can go to social media, because now if you have the names and the disease that you’re looking at, then if they have a blog or a WordPress site or anything like that, please just go and go through their social media profiles. It’ll give you an understanding into some of the hidden challenges that you may miss had you not done that. Then you’ll also be able to understand their journey as they have told it so far, especially when it’s in terms of treatment or how maybe they have deed through the years. Then you can see it and then you can be better prepared on how to ask questions. And it also just shows the respect for their time and for their story. Let’s move on to the ethical and now the practical reporting guidelines.

(00:36:14):

Let me just zoom in a little bit. The first one, now as you are doing the story, the ethical and the reporting guidelines, it is good to focus on the individual and not the diagnosis. So the focus here is on person X, let’s say Ezra. So what is Ezra struggling with? What is his daily routine? For example, when they wake up in the morning, how many tablets do they take if they’re taking medication, if it is a disease that limits movement, how do they go about that? So focus on the individual. So if you’re also dealing with maybe a disease like the motor neuron disease here where we have involved Phillip, you do not say the motor neuron disease person or as schizophrenic patient, try your best to say a person living with condition X. The second is to avoid sensationalism using language like victim or safara or saying this is a tragedy because these are terms that are condescending and it makes the person feel unworthy.

(00:37:37):

It makes them feel bad and you do not want to do that to your person. And then prioritize interviewing the patient and the family members themselves. Let them tell you the story from their own perspectives. Let them tell you how it has affected them personally. Instead of interviewing somebody else, say a neighbor who is telling you that this disease 1, 2, 3. So prioritize interviewing the patient and if the patient is unable to talk, then interview the caregiver who most of the time is the family members because now they can give you a raw perspective of how that disease has affected, has affected their family member or has affected them themselves. And then you also want to balance personal stories. Once you have gotten the personal story, you want to balance it with expert input with either rare disease specialists if they are there. I am aware that now that you’re talking about rare diseases, we do not have as many specialists for the sim.

(00:38:51):

But if there are specialists, please talk to them. Talk to genetic counselors if they are available, if they are not, try to find somebody with as close expertise as possible because even with the story that we ran today, we do not really have an expert who deals with congenital malano, cystic nirs. But the closest expert that we could get to was, I think he was a dermatologist, there was a specific title. So try and get as close an expert as you can and also mental health professionals and if you do not have any, because sometimes tracing these experts on social media and LinkedIn can be difficult. So if you do not have any request your source or your family member to link you with their doctor because then that also helps because they have the history of this specific person that you’re talking to. So then they’re able to give you specific insights about how this disease has affected the person you’re speaking to.

(00:40:02):

And also just a broad perspective of the other patients that they are treating, ensuring that your patients or your family understands exactly how their story will be used, what the details that they have shared will be used and the potential for public exposure. Because sometimes you do a story and probably you’re not as clear as how the story will be used. Now we’re talking about will this story be running in print media? Will this story be running on tv? Will this story be running? I don’t know, say in a podcast. But as well, they also need to understand that if this is a story that they feel is too sensitive, there are people who would be more comfortable sharing their story for print but not for tv. So instead of assuming that if they’re OK with print, then they would be OK with tv. It would be good to talk to them and let them clarify.

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Are you OK with the tv? Yes. Are you OK with print as well? Yes. Are you OK with print? They say yes. Are you OK with the tv? No. Then you only do what they have allowed you to do. And then there is also the aspect of, I know as journalists we know the impact of public exposure. So there are some details that a patient can tell you that you feel that you would be exposing them to stigma if you expose them, like if you run the A story on print or tv. So you also need to be careful and wise about that. And for children of course you need to follow the legal and the ethical guidelines. I think they’re usually stated in, for Kenya for example, they’re stated under the Media Council of Kenya ethical guidelines. So make sure that you consider that.

(00:42:12):

The other point is to ensure that their story covers their life beyond the disease and the mental health struggles. You want to show that they are fully dimensional beings. You want to show that their life is not just defined by the disease and their mental health struggles. You want to show that this person, even though they’re struggling with disease X, they are also brilliant. They are a brilliant scientist. They are a brilliant journalist. If you are able to show, maybe if they have set up an organization, for example, like Philip has, you want to show that they are running this organization, they are doing this. They have maybe won an award here and there. So you want to show that these are people who are not just defined by the disease. And the sixth one is when you’re dealing with rare diseases, and especially as a health and science reporter, when you’re dealing with conditions and diseases, people can be very, there’s a tendency of, how do I put this?

(00:43:29):

It can be emotionally taxing because people are affected at a personal level and the people love their family members. People love their siblings, people love their parents. So at the end of the day, your language as well needs to be compassionate. You need to be a person who understands, who reads the room about just read the room during the interview. So if at some point, and I usually say that as a reporter you need to prepare for the tears and I know there are situations where your source will be crying and you’re also crying on this other side, but that is OK because we are human. You may need to give them a hug.

(00:44:22):

Once they have calmed down, you may need to give them some space to be able to emotionally calm down. So after such, and assuming you have had an intensive session and it has been very emotional, try to shift the conversation. Once they have at least calmed down, try to shift the conversation to a less emotional subject. So if you are talking about say how these people have been stigmatized, the stigma that they have experienced, they have told you how they lost their mother or their dad. They have told you about how their life is just a life of pain. They’re in pain like 23 hours a day. Then shift the conversation, for example, to that nice moment, that one moment where maybe the nurses celebrated their birthday while he was in the ward or somebody surprised him or maybe they got a promotion at work while they were still in the ward and it lightened their mood.

(00:45:30):

So try to shift to a less emotional subject. Ask about their hobbies. Do they love a knitting? For example, can they show you what they’re knitting? Let them show you their favorite pieces, something like that so that you do not leave them in an emotional repeat. You do not leave them feeling sad. The other section, again, it still focuses on the during and after the interview. So you also want to go beyond the medical facts. So your source has told you that this is what happened to me, this is what I was diagnosed with. Let them also tell you ask about their journey. How were they struggling with their diagnosis? Because this is something that can also cause a lot of anxiety and fear and frustration. So allow them to tell you about the uncertainty about the future. Maybe they lost trust in the medical system.

(00:46:30):

Maybe a doctor gas lit them when they went to find a diagnosis. So go beyond the medical facts and understand the daily logistics of the disease. You remember when I mentioned if they take six doublets in the morning and they take another 10 in the evening, how has that affected them? And in reviewing their medical documents, this is something actually very sensitive in reviewing their medical documents, you may find shocking details that are hidden in medical jargon and your source may be unaware of the meaning. Now this is actually informed by several personal experiences I have had with sources. So you go talk to, this was a case where we had a patient, actually two, one had a rare cancer and this other person has throat cancer. Now while you review the medical documents, you realize that the doctor has indicated that this patient is in palliative care.

(00:47:36):

Palliative care means they at the end of life basically that everything that the doctor is giving them is to just ease their last visit to reduce pain. It’s to ensure that they are as comfortable as they can. Now you have seen the medical documents that says that they are on palliative care. You understand what palliative care means, but they do not understand what it means. So try as hard as you can to manage your shock. Try as hard as you can to keep it in. You do not want to spook them. And now then they’re going to take that document and run to Google. You want to manage that because if they wanted to tell you about it, they would. If they know already that they are at the end of life, if they felt that this is something that was worth telling, then they would tell you. Because most of the time, as Phillip said, there is the fear of their unknown. There is the fear of death. And sometimes

Rachel Jones/NPF (00:48:47):

In here, because I want to leave time for questions, but I want to say to you how incredibly extraordinarily powerful your insights are and I’m already planning to have you come back next year into the full session. Thank you. So if we could just sort of pivot quickly through these last three comments and then I want to open it up to questions so that the jury can ask you directly.

Mercy Chelang’at/Nation Media Group (00:49:25):

OK, I’ll take two minutes. So then the third last, do not promise an outcome such as saying this story would lead to funding or you’re going to get help from Kenyans, for example. They’re going to fundraise for you and things like that. You do not want to promise an outcome that you’re not sure of. The second last, chronic illness and caregiving can be exhausting. And if you are also talking to a caregiver, you realize that there are things that need to be done and they have probably just set apart just one hour for you. So do not take longer than you should Also allow time for breaks and check in frequently. If you see that they’re feeling uncomfortable, please just check in. Is this OK? Can we continue? Do you need 15 minutes? Do you need a break? Do you need a glass of water?

(00:50:15):

At the end of the interview, thank them for sharing their story because it is very brief even at a personal perspective that it is very brave to go out there and tell the whole world about your life and tell them about this disease that has been affecting your family. Some will ask you to pray with them, to pray for them. Do not be afraid to do it if you’re able to, because this again may be their only source of hope. I think we are actually done. Then the next section is questions. Thank you very much Rachel

Rachel Jones/NPF (00:50:53):

Mercy. Again, your expertise and your insights are incredibly powerful. So thank you for being here and thank you. I want to open it up now because there’s one question in particular that I wanted Phillip to address, and this is that was asked by Evans. So Evans, would you ask Phillip this first question that you had about the scarcity of experts?

Evans Jona | Post On Sunday  (00:51:25):

Alright, thank you so much, Phillip, for the insightful.

Rachel Jones/NPF (00:51:29):

I’m sorry, mercy unshare your screen.

Mercy Chelang’at/Nation Media Group (00:51:37):

Oh sure. Let me do that. Sorry.

Rachel Jones/NPF (00:51:40):

OK, no Evans,

Evans Jona | Post On Sunday  (00:51:44):

All thank you so much Rachel. Phillip, thank you so much for sharing that story with the journalists here. And my question to you is that how does the scarcity of genetics and neurology and metabolic, metabolic, metabolic specialists across Africa affect the confidence and the emotional wellbeing of families seeking answers?

Phillip Langat/Motor Neuron Disease Association of Kenya (00:52:16):

That question.

(00:52:19):

I would say in most cases their further availability of neurologist is even the biggest problem. Because if I was dealing with our travel to get ologist work two hours, so they’re very scarce. And then in as much as I have an idea about genetics or understanding medicine, the issue of genetic care testing comes only when you go and see a doctor. Even now you may ask me, am I willing to be tested? Well, I can say yes, but in this sense to require what we call genetic counseling and testing. But what happens if I’m told I’m cutting them jail?

(00:53:20):

So in Africa, what even now for the journalists, it’s not about genetic testing, which though it’s there is the management of the quality of life, what mercy was calling the suffering, the quality of life. If any of the journalists in aob, if you’re willing, I can take it just a pop into one of them and you see what they inquire. But honestly, we can do that team genetic, it’s coming up now in the hospital, the main hospital in Canada Hospital. They’re there, but we get the support from outside the country. Like my brother’s test, we had to send the blood sample to the us. I hope I answered you. Anything I left?

Evans Jona | Post On Sunday  (00:54:14):

No, I think I’m answered. Thank you so much.

Rachel Jones/NPF (00:54:18):

I think we’ll take a bit of extra time out of our break because are so many good questions. But I wanted to now go to Sharon Muzaki. Please briefly summarize this question that you had for mercy about an aspect of experience.

Sharon Muzaki | Nature Africa (00:54:40):

OK, thank you Massy. My question is, from your experience, what do you feel that is constantly overlooked by the media when it comes to reporting around the topic and how do you approach bringing that hidden perspective to light?

Mercy Chelang’at/Nation Media Group (00:55:06):

I you, Sharon, I think it’s something we overlook is the word. So we do report on it, but I feel like maybe it’s not as adequate as we should and it’s mainly the financial strain. So when a family tells you that they need 3 million, for example, that they have been burdened by the finances, what people tend to think is that they just had the fundraisers, for example, and they couldn’t get the correct amount that they needed or that their patient had to be, for example, restrained at the hospital because the family didn’t have enough money to clear that bill. But I think what most of us tend to miss is how it affects the small aspects of life, the little aspects of life. The fact that maybe now they can’t have a loaf of bread. If you’re a patient for example, or you’re the father of the household now, you can’t even get your children a loaf of bread to eat every day or you cannot say replace your child’s uniform for example, because there is this who is sick and all the money goes there.

(00:56:27):

It’s the other small things. You’re unable to maybe just take an Uber or a taxi to town because you need to weigh how, because you have maybe 500 shillings between you and poverty on that day. You do not have anything. If you spend that 500 shillings, then you’ll need to borrow money to go back home to, and if you take a mata with all the inconveniences that come with public transport, then at least you can be able to cater for this other pressing bill. So I think what we need to do is to explore the nitty as well. As much as it is critical for a person to be detained at hospital because they can’t clear the medical bill or to call for fundraisers every single time, that is big. But also the small nitty gries of life that make you feel like you have failed, that make you feel like you’re failing your children, for example. And yet this is a disease that you have no control over. So I feel like maybe this is an aspect that we need to explore more.

Sharon Muzaki | Nature Africa (00:57:40):

OK. Sorry Richard, just to add onto that, have you met, let me say the family expecting something from you, like a journalist while you are asking, you’ve gone for an interview. I know. How have you addressed that? Because most of the time when you go for interviews, families like this that are so vulnerable, do expect something from us in terms of money or any kind of support. How have you addressed that?

Mercy Chelang’at/Nation Media Group (00:58:09):

Two ways. Sometimes there are newsrooms that offer you the fixer fee. The fixer fee is basically for Kenyans, we same the person who is going to take you around or take you to the sources home or take you to the chief and things like that. So they usually give you the fixer fee. So if you get the fixer fee from your newsroom, the better you can use that. But if not, most of the time we just go into our pockets because I think at some point we stop being journalists and now we become human. Because sometimes even if it’s not a rare disease, you go talk to a family that maybe they have three, six children or four children, their living conditions are dire, or you are in an informal settlement and the children maybe they do not have milk and you’re there doing an interview.

(00:59:03):

I think it’s only human that you try to help to the capacity that you can. And I think now the issue of the promises, you remember the promises I mentioned. You avoid giving promises. So if you’re able to afford 500, just give 500. Do not say, let me go back to the office and then I will see what to do. I will fundraise with my friends. Just offer what you’re able to tell them that this, if it’s 500 shillings, I have given this to you from my own pocket. The office does not provide for this, but this is for me as an individual, I hope it’ll help you somewhere.

Rachel Jones/NPF (00:59:44):

I will take one more question.

Phillip Langat/Motor Neuron Disease Association of Kenya (00:59:50):

Would you allow me to add something? Oh yes, please. Because one thing that possibly the reporters should really work on is to hit the policy makers by the belly. Because most of the times these stories, they never read them. I was so surprised Richard could read this from as far as where she was, but my good friends would just look at it and say, oh Phil, I saw your photo in the newspaper. That was great. You are very open. But they never read. So we also should as reporters bring all of us together and we walk somewhere, it’s very sad. The person of motor neuron disease is that they lose everything. We have to be their phrases, we have to be their strength, we have to be their everything. I can give you an example of brass, Brazil. Somebody was from brass Brazil, talked here, Canada, the government.

(01:00:51):

The moment you have this sickness, it’s been made it a way that you get the state help and the support helps a lot. But in Kenya now it becomes a big problem. I too, I’m supposed to go to Canada at the end of the month to present a paper on the scene. I applied for a visa two months ago and this Canada now should consider us not as people going to not to come. We are going to live in Canada, but to present our case in Africa in the International Alliance of the m and t Association so that we can be heard. So those are things now that newspapers people should report. Thank you.

Rachel Jones/NPF (01:01:39):

We unfortunately must end there, but that is an incredibly important point that you have shared with us. Phillip. This entire session for me has been sort of the epitome of why this kind of format, this kind of training, this kind of information must be shared globally and the insights that we’ve developed from Mercy and Phillip will stay with me for a long time. So I want to take this opportunity to thank Mercy Cheen got an investigative health and science reporter for Nation Media Group and also Phillip Ott, the founder and chairperson of the Motor Neuron Disease Association of Kenya for inspiring us, informing us, and helping us do a better job of communicating the impact of rare disease on mental health. So thank you both for being here and I hope that Phi in particular, I know that many of the journalists in your region, but certainly anywhere, we’ll want to reach out to you for more information. We will share your email address if you open to that. And Mercy, definitely I’d like you to mentor me as a matter of fact. So I hope the other journalists will be able to contact you to ask you for advice or questions. So thank you all for being here.

Mercy Chelang’at/Nation Media Group (01:03:21):

Thank you. Thank you.