Ida Mirković Knaus and Yamina Hsaini Transcript — Nov. 20, 2025
Rachel Jones/NPF (00:00:02):
For the first session of day four, we’ll hear two powerful voices that will amplify the role of youth advocacy in the rare disease realm. First, Yamina Hsaini joins us from Paris, France. She is a 26-year-old patient advocate and content creator who has been living with rare chronic diseases since she was 14 years old. After years of misdiagnosis, Yamina began sharing her story on social media in 2016 to raise awareness and make rare diseases more visible. Yamina is joined by Ida Mirković Knaus. Ida is the expert, associate and secretary of rare diseases, Croatia. She is also vice president of the Croatian Neurofibromatosis Association. She has lived experience in that realm because her older brother lives with that rare disease. ADA’s work provides stronger psychosocial support, inclusive he care, and evidence-based policy development for people living with rare diseases and their families, Yamina and Ida. Thank you both so much for joining us today. I want to start with you Yamina, because your story is intriguing on so many levels, but for the first 14 years of your life, you did not have any of these experiences. You did not know that you carried these chronic diseases. So please take us on a journey of your life and your experience through the presentation that you have prepared for us.
Yamina Hsaini/Yamina’s Life (00:01:58):
Thank you Rachel, and thank you to everyone who is at attending today. So I will. So today I will show about my story living with a rare disease, and I will also explain how my online advocacy work started and how we impacted my family. I will also show you a video that had huge impact online and share with journalists some K tips. So I was born in perfect health, but everything changed when I turned 14 because I started to have digestive symptoms, especially chronic vomiting. Basically it felt like my stomach just couldn’t keep anything anymore and it led me to see many doctors, but unfortunately all they was just to give me a medication, they didn’t work at all, so they didn’t even try to understand and just said it could just be stress or that everything was just in my head. And this led me to experience years of misdiagnosis to the point where I was sent to psychiatric care. And of course it was a difficult time for me because I received completely inappropriate care and I was mistreated and felt misunderstood by everyone.
(00:03:37):
But when I was 16, I finally got in SWS because I had a medical test that had never been done before. So it’s called a gastric emptying study and it’s a nuclear medicine test, so it’s measure how long the stomach takes to empty, and my results showed the cause of my digestive symptoms because I was diagnosed with severe gastroparesis. So what is gastroparesis? It’s a condition where the stomach is personally paralyzed and doesn’t move food normally. So food stays here too long and which can cause symptoms like chronic vomiting. But however, even after his diagnosis, doctors kept saying it was just all in my head because they couldn’t explain the cause of my gastro prioris. And because this condition is rare and not well known. So I continued to receive inappropriate care and even through I know had a medical proof that symptoms my symptoms were real. And I couldn’t find any doctors who truly understood my condition because most of them had never heard of gastroparesis or didn’t know how to treat it properly.
(00:05:06):
Now I will talk about how all of this affects me, the consequences it had on my life. I became so sick that I had to leave school and I spent almost all of my teenage years in hospitals and fighting to survive. I also got isolated at an age when people my age were building a social life. So it also started to affect my mental health because I went through a very dark emotional period and I suffered from depression. So I wasn’t only suffering physically anymore, but also emotionally. But then everything changed when I turned 19 because for the first half of my life I received appropriate care for my gastro parais and I met a doctor who knew how to treat this condition so that way I know have to treat dive that helped me to stabilize my condition. So the first is another al feeding tube.
(00:06:17):
So it goes from my nose to my intestines and it’s allowing me to receive nutrition directly while bypassing my stomach. And so it avoid me to have symptoms. And the second one is a gastric pacemaker. So it’s a small bur placed under my skin and it’s connected to my stomach. So tisone helped to help me to stop the chronic vomiting. So it truly became a life changer. But now we will see that rare diseases don’t only impact the patient. They also deeply affect the whole family. For example, I live with my parents, my brother and my sister and my daily condition affected her family routines and the way we live together. My parents had already experienced the loss of my sister. She passed away when I was still child. So facing another serious illness in the family was extremely painful for them. And it’s still sometimes hard for my family to fully understand what I’m going through because sometimes they try to act as if everything is just normal, but there is still a lot of misunderstanding. And my disease also created ersonal challenges were we and C from a family because for example, when everyone eats together, I often can join meals because my gastro parais needs a completely different diet, different routines, and sometimes symptom like fatigue prevents me to participate in family activities.
(00:08:09):
Now, how my advocacy journey started on social media. So it was during two years of medical misdiagnosis and isolation that I really needed to be understood. And so that’s why I turned it to social media. But at first it was just a way to express myself and then it became a therapy for me and a space where I finally could be understood without judgment. And in a many way it was getting justice for all of the panel I’ve been going through. So people online started to recognize themself in my story and many reach out to tell me how my post helped them to feel less alone. And so through my platforms, I managed to raise much more awareness for gastroparesis in France and it helped many people to get diagnosis on time and avoid years of suffering like I did. So many people online also wanted to help me.
(00:09:16):
For example, they suggested doctors and medical exams I had never heard of, and that’s led me to discover that I was living with other chronic and rare conditions, which explained some of my other symptoms like fatigue, migraine pain, et cetera. So you can see social media didn’t just give me a voice, it helped many people, but it also helped me find a better care and a deeper understanding of my own body. And that’s how I realized that my story has an impact. Then I turned my pain into a, and my advocacy journey truly began by sharing my daily life as Yamina’s life on social media.
(00:10:05):
And here are some recognition and opportunity I got for my advocacy work on social media. So for example, I received the 2025 award Black Peers Social Media Award, and it was an equably painful moment because it highlighted the importance of raising the voices of people living with diseases. I was also envied to speak in Washington DC at the National Press Club for webinar. It was organized by Science aaas s and Ipsen Fian. So it gave me the opportunity to share my experience as a young advocate in international level and my story also been featured on global platforms including a British magazine dedicated to raise awareness about rare diseases. It’s called Rare Revolution Magazine. And I got featured in the 2025 ton edition as the real aspiration. So all of these opportunities are the proof that sharing a personal story can truly create change because I searched with nothing more than my phone, nors professional, and even like that, it led me to create opportunities that’s connected with global communities. Now I would like to share with you an next rep of a video that show you an example of the kind of content accurate online to raise awareness, but Ameds video in 2022. So it’s not completely up to date anymore, but it had a huge impact online because it summarized everything I was going through at that time and it had many people better understand my complex situation. The video is in French, but there is English, so I will show it on YouTube.
(00:15:04):
Thank you for watching. The full video is in my YouTube channel. And now I would like to give some key tips for journalists based on my own experiences. So first, the first tip I would give is that it’s important to focus on authenticity because people connect with what feels real and relatable. So when you show the real daily life of a patient, not only the dramatic moments, you help people truly understand what we go through because beyond every diagnosis there is a person and the more people understand someone, the more they can connect to their story. And the less I judge, the second tips that I will give to journalists is to show that rare disease stories are not only about symptoms because they’re also are about the fight to be heard, the years of misdiagnosis, the emotional struggles, the difficulties of accessing proper care.
(00:16:14):
So these elements are essential, especially in country where healthcare access is limited. The third tips I will give is you have the power because you have the power as journalists to make the invisible visible is to show what we don’t see with rare diseases. As journalists, you have the power to highlight what people cannot see. Invisible pain I obstacles, daily challenges. And by doing this, you give visibility to people who are often forgotten. So your reporting can truly change life. And the last tip I would give you is to help transform parent into a purpose. Because when you give patient a space to tell the story, you helped turn suffering into something meaningful, you give them Ty, you give them visibility, and you help also feel less alone. So these are not just medical stories, they are human stories. And you can continue to exploring the way to encourage audience by highlighting respectful storytelling because every narrative can shape how the world sees rare diseases. Thank you so much for your attention. It was a truly honor to share my story with you today.
Rachel Jones/NPF (00:17:42):
Thank you so much for an incredibly powerful presentation. I want to ask one question before we go to Ida, and that would be how did you prepare your family for the fact that you were going to share all of these details, all of your struggles, all of the challenges to the public was that this a conversation that you had to have?
Yamina Hsaini/Yamina’s Life (00:18:08):
In fact, I didn’t from them that I will share about my story online. At first I wasn’t showing, I was doing this anonymously, so I wasn’t giving my name on everything. It was just like a personal diary online. But then when I saw that it helped many people, I start to show myself my real name. But then my family discovered after on social media, I never told them that I was sharing my life until they find them on their own. They was prude of what I was doing, excepting my mom because she find it’s too personal to show online. So she didn’t want me to show off these personal things, but I was explaining her how much it helped me. And even today it’s still not very easy for her to understand why I’m sharing all of these things online. But I just keep saying it helped me and it helped many people.
Rachel Jones/NPF (00:19:18):
Amazing impact. Thank you so much. Thank you. Let’s now go to Edita and your story.
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:19:28):
Thank you. So my presentation is mostly focused on youth leadership and youth advocacy. So I want to start by maybe introducing myself. I’m a sibling to person affected by rare disease as was mentioned. So my brother suffers from neurofibromatosis type one, and that was kind of my way into rare disease advocacy. He is eight years older than me. So my advocacy journey started at a quite young age before I was even aware of it because his Can I
Rachel Jones/NPF (00:20:03):
Ask you, I’m sorry to interrupt you, but can I ask you to briefly just explain to the journalists a little bit about neurofibromatosis?
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:20:09):
Yeah, yeah, I was just about to. So what is specific to nf one is that it has really visible physical symptoms that includes fibrous on your skin. So fibrous are benign tumors that develop next to your nerves. So the condition is progressive, you’re born with it and through the years the number of fibrous is just getting bigger and bigger. So in some cases there are also big fibrous, which take big tumor that can be on a part of your body. So my broader condition was visible since he was a little kid. It started with some hyperpigmentation which developed into fibromas or the benign tumors. So when I was growing up, I had no idea what that actually was. I was kind of jealous that I didn’t have those because he was my older brother and I wanted to do everything the same as he did.
(00:21:17):
So I was kind of oblivious about the complexity of that condition. But I started to advocate for some changes in that field because I started to noticing that people are treating him differently, people were staring at him and I would just go and lecture, let’s say people on the streets, you should not do that because he has this and this condition because my idea was if they knew they wouldn’t do that. And that is how my advocacy kind of started. And then 20 years later on I’m 29, it became my profession. So I’m a social worker and now I currently work with rare diseases, Croatia, that is our national Alliance for Rare Diseases in Croatia. And I’m also the vice president of the Croatian Neurofibromatosis Association. I’m currently also engaged in different youth advocacy groups focused on rare diseases. So I will now share if it’s okay, the presentation or if there are any questions, anything I should also mention
Rachel Jones/NPF (00:22:28):
We should. We’ll do that at the end of your presentation.
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:22:32):
Okay. Okay. Okay. I’ll just, so is everything okay because I have the screen so I’m not sure if you’re seeing everything properly.
Rachel Jones/NPF (00:22:51):
We can see it.
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:22:52):
Okay, great. Thank you. So this presentation was kind of developed from my personal journey, my role in rare diseases, Croatia, and between the youth advocacy group we were discussing this topic. So it is a mixture of everything. So what I want to start with is kind emphasized the media’s unique power when it comes to rare disease community and how we can develop the partnership between us. And then what we really agreed on is that ethical reporting on rare diseases and what is our perspective on that and some of the inputs we would like as youth advocates give to journalists and at the end to introduce who are we actually as youth rare disease advocates. So about the media’s unique power, I just want to apologize if I’m using the terminology correctly because maybe media journalism journalists is means different contexts, but I’m all using them in the same bucket when I’m talking to you.
(00:24:10):
So I’m apologizing if the terminology is wrong, but I’m addressing you here present today with all those terms. So what are rare disease communities and patient groups are mostly focused is raising awareness and advocacy. So when it comes to raising awareness, media has a really big impact in helping us increase the understanding of rare diseases and kind of shed light on them. But also it shapes a public perception and the narrative that public has about rare diseases. And I’ll come back to that later, but it’s really important to keep in mind that it’s not only sharing a personal story but also shaping how people are perceiving rare disease community through that stories. And the next thing is what we are focusing on is advocacy. And media really help us to drive pressure that leads to change. And from our experiences in rare diseases, Croatia, it happened a bit too many times unfortunately that we had to go through media to put pressure on our government to make some kind of a medicine or treatment available in Croatia.
(00:25:35):
And I’m saying it’s unfortunately not because I, not because think media is not important, but because I think fighting for your basic needs and rights shouldn’t be a big media campaign. But unfortunately it is. And here I just want to mention this was our latest example of the case with Plegia. That is a genetic condition that affects the bone growth and it is connected to different types of dwarfism. And there is a medicine for specific age group affected by this disease which is available in some countries in Europe but was not available, I’m sorry, in Croatia. So we went through all basic paths of how do you get the medicine to come to your country, which didn’t work. And then the parents actually did a really good campaign with the media and pressured the government and now the I medicine is finally available to some of our patients.
(00:26:48):
So this is where media really help us in the advocacy path as well. And also on the personal side, it is really sometimes empowering to and to share your voice and the media and the journalists really empower us as a patient advocates when we are able to share what are we going through. So now on ethical reporting on rare diseases, we call them rules. We discussed if rule is appropriate, but as a patient advocate, my job is to fight for the best we can. So I will call them rules, but those are just some tips on what we would really appreciate when we are talking to the journalist. So the first one is the patient should be in control of how the story will be shared. And first thing is to inform the person you’re interviewing on what is going on and to introduce yourself.
(00:27:54):
And it sounds so basic, but it happened to me several times that I was giving an interview that I was not even aware. I thought that I was just on a phone call discussing something that will happen in the future, some kind of interview and talked about different topics that we should maybe discuss or should not discuss. And then they just said, okay, thank you and bye. And I realized, oh, this was the interview. And then the next day the papers were citing me on some things that I had no idea I was actually talking about. So this is an important step not to skip and always to offer a stop clause because those are sensitive topics. So it is normal that a person can maybe feel overwhelmed. So we just give the possibility to pause to end any time and to ask in advance how much details they are comfortable sharing.
(00:28:57):
Because if you maybe go into some topic that is too intimate for them, they kind of feel like they have to share it then, but maybe they wouldn’t if you have discussed this previously. The second rule is to avoid or be aware of the emotional venting trap, we called it that way. So interviews can sometimes trigger or lead to oversharing because I think it’s a really visible in rare diseases, the lack of the possibility to share your story and share the complexity of it. And then once you get a chance and you get the interview, you start to kind of vent out. Also you overshare something that is maybe not related to the interview and maybe it’s really intimate to you but you’re not actually aware that you’re starting to kind of go from interviewing to oversharing your story because you just wanted to get it out there.
(00:30:05):
So kind of protect the person you’re interviewing from later regretting to what they have said and kind of be aware that maybe they are oversharing and ask them afterwards, are you okay with me publishing this and this? And also to kind of provide a post-interview like safety net. It is also connected with that fact that this can be triggering or going into some sensitive topics. So just to remind them that there are some resources or NGOs or something they can reach out afterwards. And also it is really important for you also to take care and be aware that when you’re talking to rare disease patients or rare disease advocates, those can be really hard topics that can be overwhelming and it is okay to feel overwhelmed, but just be aware of that you should take care of yourself through that as well. And mandatory authorization that is also connected to all of this, let the patient review the quote or some details they gave you because we just want to own the story.
(00:31:28):
If we are already sharing our story and also these things I’m talking about right now, they are coming from a perspective of patient advocate and you as a journalist will know how much of this is actually applicable to you and your field of work or your current tasks. So this is something like our wishlist, but you are the experts on your field. So just if and how this will be applicable to your work, then avoid those shocking headlines. We are aware that you need something that is like eye catching that will draw attention for someone to read the article to open the story. But it’s important to have in mind that it can also affect the person or the whole community and it can be stigmatizing sometimes. And here I also have an example of a patient with a quadriplegia, which I mentioned earlier, which he shared his life story, how he was born with plegia, what are his struggles through life, some medical issues he had.
(00:32:50):
And he also mentioned that at the time that he was little and there was no medicine that is available today, he had to go through something that involved breaking his bones. I mean doctors were breaking his bones in order to them to regrow in a more in line way because it was causing him a lot of pain and different issues. And then out of the whole life story, the next day the title was that the man decided to break all of his bones to be few centimeters taller, which was not the point of the story, which was some just little detail he mentioned to emphasize how hard this can be to have this condition. But then he reached to us and said that he feels like complete lunatic and someone who read that title will think, oh, this person is not really mentally, maybe he has some mental struggles or it can also create a picture this community of people affected by plegia to someone who is really has low self-esteem and is willing to break his bones to grow a bit, which is not true.
(00:34:21):
So avoid, not to avoid but to be aware of what message is given through that headline. Also to avoid that tragedy narrative and not to reduce people’s lives to their losses. Rare diseases do carry a lot of loss, a lot of struggles, a lot of ups and downs, but those are some of the most resilient and most the best self advocates I have met or when I’m talking about the whole rare disease community. And I think that the emphasis should also be put on that. Then the next one is do not shop for the most tragic or the most dramatic cases. And this is something that is coming from also our experience in our national organization where journalists come to us and they are just like, Hey, I want to write a story. I would like a young female who has a progressive condition and it’s tragic but it is cognitively she is still fine to talk about it or just give me single dad of a dying child.
(00:35:40):
Yes, there are different stories, but those are people and of course we are aware that you do need, you have a task as well and you need to share some kind of a story, some kind of a message, but do not turn it into shopping for groceries and I’ll just pick this and this and I need that. We can discuss this And then to protect dignity as that is your core role. And of course you’re a journalist, you are writing a story, but just to be aware that you’re not only amplifying a personal tragedy but you are pointing to a systematic issues through someone’s personal story. So what also ya has talked about, I can relate to so many things even though I’m not affected, even though my brother is affected by the whole another type of a disease and working with our national organization, we go, we have so many different patients but there are systematic issues that are common to all of us. So be aware that this story is also about pointing to a systematic issue as well.
(00:37:07):
And then to a more happy topics, who are we as a rare disease youth advocate? So youth advocates are often people who have personal or close experience with rare diseases, which gives us really strong motivation for change. I don’t know how to explain it. I think we kind of have a unique youth sparkle. We are really curious and open and really high engaged and all youth advocates I have met have such a strong knowledge on so many topics, not just on their own disease and management on their disease, but on so many other topics which I think makes youth also an interesting group to report on or to just keep in mind at someone who you can report on the right stories because the story from the youth perspective or maybe from a parent perspective can be a quite different one even though it’s the same family and same experience from the outside.
(00:38:24):
But it is also important to remember that youth advocates are also mostly in many cases are also the patients. So they are balancing through multiple pressures to having their health varied from day to day and they can also be overwhelmed and they are from what I’ve experienced, are working over time really all the time just to speak up and get a story out and that is the part of the high engagement, but it comes with the cost and just be mindful of that when you are reaching out to youth advocates and where to kind of find us first. I have put this rare disease international youth leadership program. This is a program I’m a part of which has, I think it’s 13 of us, just the most amazing young people who are advocating for rare diseases. We are across six continents, so we are really engaged in both local and regional stories and systems and we cover different fields of rare diseases.
(00:39:46):
So I think we are really strong group to start with if you want to engage more specific to some topic or some region. Ologists also has a rare disease day, young ambassadors which are becoming more and more active because we are approaching rare disease day, I think it is today marks a hundred days until Rare Disease Day, which is on February 28th. So there will be a lot of youth ambassadors getting a more and more engaged of course social media I think it’s amazing source where you can find really amazing youth advocates there, which are doing like Yamina, so much amazing work across the whole globe. Also one young world ambassadors covers like many, many different youth ambassadors from many different fields. Not only rare diseases and word of mouth. I think the best way is to ask some youth advocate just to pinpoint like, Hey, I know someone from, I dunno South Africa that may be helpful for this and this.
(00:41:10):
So we’re I think quite well connected to each other. So if you need some help or guidance with more specific topic or more specific group, I think we got you covered. And yeah, I know that there are many more different groups and national. I have put only these because these are mostly familiar to me and I’m mostly engaged in these groups, but there are so many mores you just have to ask us all and I promise we’ll find a way to get everything whatever you need. And I’ll now stop sharing, oh no I won’t. I still have a few lines I want to go message to be. So to treat the personal stories that you’re receiving as a gift and to treat them with really a care and dignity because those are some really hard experiences that someone is basically giving to a stranger. So kind of be careful and treated with dignity it deserves and to protect the person, not just the story, to be mindful that it is a person’s life experience.
(00:42:36):
There not only that one story that will be just one of your many stories you’ll be sharing through your professional life and patient organizations are really your allies. I mean we are really open to, as I said on the first slide, we are open to partnership in any ways. I think it’s a win-win partnership and we are quite well connected in terms of political situation on both individual experiences, systematic issues in our country. So just feel free to reach out to any patient organization that is close to you or maybe ask for help, but generally patient organization are your allies and just feel free to approach us whenever you need. So now I’ll stop sharing and thank you for the intention.
Rachel Jones/NPF (00:43:39):
Well you are a very impressive leader and advocate Ida, so I want to thank you for that. We have many questions in the chat, so we’re going to go ahead and get started. I want to remind the journalist to please sort of summarize what you’re asking our guests because we want to get as many as possible in. So let’s start with Evans from Zimbabwe.
Evans Jona | Post On Sunday (00:44:09):
Hello everyone. Hello Ida. Hello Mina. My name is Evans Jona, I’m a health reporter from post on Sunday right here in Zimbabwe. I’ve got a question for Ida and a question for Mina as well. So I’ll start off with Ida. You’re the one who just ended your presentation just now and thank you so much for that detailed presentation right there. My question is that many African traditional communities fear that cultural narratives become distorted when rare disease advocacy stories are shared on social media instead of formal news outlets. So what steps can generalists take now to ensure that these stories remain authentic, culturally respective and accurate representing both platforms?
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:45:02):
I would say it goes to that part of the patient owning their story and really discussed about not only what is that person’s story, but how do they want to be presented depending on their cultural like surrounding. So as I’m not so familiar with the African culture and I’m based in Europe and haven’t had so much experience with that, but just from top of my head that would be my idea to see how that community breeds let’s say, and how the story should be addressed in a way that it’s not stigmatizing or it’s not sending the wrong message depending on where it is shared or if we are talking about sharing it globally on social media to also highlight the fact of where it culturally comes from. So to give a little context on that, because I mean I’m aware that there are different societies, we have different values through, even in Europe it is differently how you are going to talk about some disease in Croatia or in Serbia. So I would give also a bit of a context, but I think when you said where are you from, I immediately thought of Vincent who is from Zimbabwe who is also part of a youth leadership program with a DI. So I think maybe including him would be more beneficial to answer this question. So yes, as I said Air DI youth leadership program, we cover all continents. So maybe I could share the link so you have more contacts from that are closer maybe to your community and can give you a better answer than I can.
Evans Jona | Post On Sunday (00:47:23):
Thank you so much
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:47:24):
If that makes any sense.
Evans Jona | Post On Sunday (00:47:26):
It does, it does.
Rachel Jones/NPF (00:47:28):
Let’s go to Asako.
Asako Takaguchi | Kyodo News (00:47:31):
My name is Asako and I am a journalist based in Japan. So thank you so much ya and Ida for a great presentation and thank you so much for sharing your stories. So I know that the patients face different challenges and the barriers depending on their age and life stage. So this is a question for both of you. Do you think is there any missing point in rare disease reporting so far from the prospective of younger rare disease patient or an advocate? Mina,
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:48:12):
If you want to,
Rachel Jones/NPF (00:48:13):
Yeah, I’d be interested in hearing Mina’s thoughts about the kinds of stories that you see and the kinds you would want to see.
Yamina Hsaini/Yamina’s Life (00:48:24):
Thank you for your case questions. I think when reporting rare diseases, maybe journalists don’t show all of the parts of the life the person because sometimes people when they see where this disease reporting, they only see the part, the medical things and we need to see the human behind every negative things and that more connect with people. So I think when reporting a rare disease, you need to show the life of the person globally the positive things and everything the person can face daily in their daily life. Thank you. Thank
Asako Takaguchi | Kyodo News (00:49:10):
You.
Rachel Jones/NPF (00:49:12):
Let’s go to Li Wei from Malaysia.
Li Wei Soon | Malaysian National News Agency (00:49:18):
Hi Yamina, my name is Li Wei, I’m from Malaysia. So I’m quite curious before you dig content on the social media or to advocate what you are having right now to the public. So do you have any challenge of explaining to the public about your condition since when they saw you with a tube on your nose, maybe they were curious about your condition and I’m not sure because in Malaysia there’s a lot of rare disease patients, they find it very difficult, very challenge to explain to the people because when they try to explain it they will involve a lot of his medical jargon. So how you simplified it that Yeah, that’s all. Thank you.
Yamina Hsaini/Yamina’s Life (00:50:04):
Thank you for your questions. So yes, it was very difficult at the beginning to talk about my disease because there were a lot of curious people and especially once it’s a rare disease, it’s more complicated to explain things because people don’t understand what you are talking about. That’s what makes me even more to turn to social media and to spread awareness because I realized that a lot of people don’t understand all of these things and it was very important to raise more awareness. So I hope I have answered your questions.
Rachel Jones/NPF (00:50:49):
I think Albina has a question for
Albina Kastrati | Freelance (00:50:55):
Hello, I have a question for Ida and thank you all for this presentation. Am I audible?
Rachel Jones/NPF (00:51:05):
Yes, we can hear you.
Albina Kastrati | Freelance (00:51:06):
Can you hear me? Yes. Okay. So I am Albina, I’m from Kosova, I am an investigative journalist and I have been wanting to do a story for kosher disease in Kosova, which there are only 50 patients who have this condition. But because I do usually tackle sensitive stories, it has happened that the source has pulled back or has been afraid. And my concern as a new journalist is always how can I work in a way that it doesn’t seem like I’m persistent or as if I’m caring more about the story than the person themself actually because it has happened that or what if it happens again when I’m working on a healthcare story that after the interview is done and some time passes and the source now says I’m not comfortable with the story being shown. And of course you as a journalist want to find out and usually I would offer to speak off record and to see what’s the issue, but would that cross the line with being shown interest for the story and for them or being unnecessarily persistent and causing them stress because that’s the opposite of wanting to do that.
(00:52:29):
Thank you.
Ida Mirković Knaus/Croatian Neurofibromatosis Association (00:52:31):
Yeah, I understand and it is not uncommon that patients do pull back after an interview, but from our experiences it’s mostly when the topics of medicines are discussed, which happens to us is that the person goes out and tells like, Hey, we do not have this medicine available and it is available in, I don’t know, Germany or different kind of they have the pills and here I have to go get through the IV every two weeks and then they are scared of if I say that, will I lose this little I have already. So that is a common issue that our members are facing because they are scared if they share that somebody else got is better and that our government or someone will pull back what little they have. And I think it’s important to encourage the person to share the story because just to remind that the health is the basic human.
(00:53:51):
We are not talking about dignity and basic human rights. So to remind them because they’re used to being in so bad positions and so badly treated that they think it’s a luxury to have some kind of a basic standard. So that is also why they pull back to remind them that it is not story just about them, it’s about systematic issues that they are being brave enough to talk about. And I think it is also important to include patient organizations because it is also our job here, not your as journalists to empower and prepare our patients who are willing to share their stories. And that is I think why that partnership I was talking about is really important to reaching out to patient organizations because I think that is our part of work to do and to kind of prepare, and this is something with rare disease, Croatia, what we are doing too is that we talk to those people who are going to the media in advance and to kind of prepare them what they can expect, why is this important to talk about and this I hope it answers the question.
(00:55:22):
So maybe to, yes, it may seem like putting an extra pressure, but just to encourage them to remember why is this happening, why is this story important? But also remind them that if it’s too much for them, that’s okay. And to reroute them to patient organization or to someone who can help them empower themselves to advocate. Because when you are affected by rare disease, you have to self-advocate. You’re not given an option, you just have to fight for yourself. Unfortunately that’s the case. So that is our part of the job to do that, to empower patients.
Rachel Jones/NPF (00:56:12):
Thank you. We have so many great questions and unfortunately we’re near the end of our time, but I wanted to give Robert from Kenya the opportunity if you would quickly summarize your question because it is so important. Robert, are you there? Okay, well he may be having some connection questions, problems, so I will ask it. Robert, are you there? Yes, please ask your question. You’re on mute. We can’t hear you. No. So I’ll ask it for you Robert. You can stay on camera, but he wants to know the rare disease community is rightly described as resilient, but focusing on resilient, are journalists inadvertently sometimes suggesting that the burden is on the patience to be strong rather than the society or the systems? Let’s start with you Mina and then Ida.
Yamina Hsaini/Yamina’s Life (00:57:22):
So Christian,
Rachel Jones/NPF (00:57:23):
So the question is, so often in reporting the focus is the community is described as resilient, but in focusing on resilience, our journalists sometimes inadvertently suggesting that the burden is on the patients to be strong. They’re putting forth this image of the strength of families and patients. But does that take away from the responsibility of systems and policies to be strong as well?
Yamina Hsaini/Yamina’s Life (00:58:03):
So the difficulties of showing the precedent and family, sorry, can you repeat in any
Rachel Jones/NPF (00:58:11):
Way it sort of as if you show how strong and powerful these families and patients are, do people sometimes walk away thinking, well they got it handled, they can do it, they can deal with it themselves?
Yamina Hsaini/Yamina’s Life (00:58:27):
I think they have to change the mind of how the family and patients thinks about the rare diseases and show them that it’s not something stable because most of the time patients as family don’t want to show anything because for them it’s vulnerable things and it’s important that journalists show that there is nothing taboo and it’s important to talk about of these things. So I think it’s to change how people see this community and to turn, turn how it sees in society because everyone thinks the world disease community don’t have to be showed and it’s just journalists have to talk about this a lot of times and I think the passion will start to change their mind and also the family.
Rachel Jones/NPF (00:59:30):
That’s actually a very good point because I think journalists need to remember that even though they’re producing a powerful inspiring story, those families aren’t always strong. There are times when there’s fear as Sarta told us yesterday. You have your moments of fear and worry, et cetera. So thank you Ida, take us home, lead us out with your thoughts on this issue of capturing the strength and resilience of rare disease families, but how that can sometimes be a problem.
Ida Mirković Knaus/Croatian Neurofibromatosis Association (01:00:04):
Yeah, I think it’s important to stress out that we become resilient because we have to. So it wasn’t like a choice that it was like ban so you don’t break. That’s kind of a resilience we are talking about. So it’s not that you just have no other possibilities of, other than doing your best and being as resilient as you can because the system is broken, the system is not supporting you and if you broke down nothing, you are depending on yourself when it comes to rare diseases. So if my parents just gave up and we didn’t become a resilient family, my brother would die. So that’s kind of resilience we’re talking about. That is the narrative of resilience when it comes to rare diseases. We’re bending not to break, which makes us resilient, but that doesn’t mean we can take as much load as possible like every load, all the load possible. It’s just that we are not given an opportunity to ease our way out. We have to do it and that makes it resilient. Yeah,
Rachel Jones/NPF (01:01:20):
That is an incredibly powerful way to end this discussion, particularly about young people in this space. You do have the power and the will and the determination to bend so that you don’t break. So thank you for sharing that. I’d like to take this opportunity to thank Ida Kovic and ya Saini for talking with us about youth advocacy in the rare disease realm. And we will be in touch with you. You can best believe. So thank you so much.
