Meet Our NF Academy Ambassadors Jacob and Maryam

00:00:18: Hello everybody and welcome back to the third episode of The NF Podcast.

00:00:22: As you can hear, I'm certainly not Klaas Rul but my name is Karin Hogendijk... ...and i am the current president of NF Patients United.

00:00:31: I have a daughter who was diagnosed with NF-I at the young age.

00:00:35: That's when my involvement began, and when class stepped back as president... ...I was more or less forced into my new

00:00:42: role.".

00:00:43: No that is a joke of course!

00:00:45: I really enjoy what i do And thats why im here.

00:00:48: So today we have no doctor or mental health coach present like in first two episodes But instead three lovely women & a lovely young man Who are affected by NF themselves or have someone in their family affected by it.

00:01:02: With two of them I will talk today, because this is part one episode three.

00:01:08: Today i'll be talking with two lovely ambassadors Jacob and Mariam.

00:01:12: Jacob from the UK And Mariam from The Netherlands.

00:01:15: While Jacob has diagnosed himself with NF-one, Mariam's sister is affected which why she is here today.

00:01:23: Thank you guys for being here!

00:01:25: I'm very happy to talk like to introduce yourself.

00:01:30: Hello I'm Jacob, i'm a youth ambassador for Childhood Tumor Trust which is the charity that supports young children and their families affected by neurofibromatosis type one in the UK.

00:01:41: thank you take up and welcome.

00:01:44: so did you immediately find a good NF specialist in your country or was it hard to find someone who had enough knowledge?

00:01:52: So I was diagnosed very early on because my mother.

00:01:58: So we pretty much found a good pediatric specialist straight away.

00:02:03: But the transition from childcare to adult care is something that tends come up quite often.

00:02:09: Personally, I've found the transition particularly poor when i left pediatric care and was not referred to any adult specialist which left me feeling like quite abandoned um... And I wouldn't know who turn two if my NF progressed and I was simply told just to go to the doctor regularly for a blood pressure check-up.

00:02:30: Okay, thank you Jacob.

00:02:31: so You're saying there are not enough adults NF one specialist?

00:02:37: Yes in

00:02:37: the UK.

00:02:38: yeah

00:02:38: In the UK especially from my knowledge There's not enough support that can be provided.

00:02:44: So we have a centre in Manchester But they only refer you across if you had quite severe case of NF.

00:02:51: but My symptoms is quiet mild.

00:02:53: obviously Over time my symptoms could get worse and I wouldn't know who to turn into at any given point if the situation of my NF Getting worse.

00:03:03: because when you go, too like your GP and say i think this is happening.

00:03:08: or Any doctor really?

00:03:10: You're going to see.

00:03:12: I've got neurofibromatosis.

00:03:14: they go.

00:03:16: What's that?

00:03:17: Like thats always a first instinct.

00:03:19: I don't ever met any doctor That knows what neurofibromatosis says.

00:03:24: So every experience I've had at my doctor's, they'd either Google it or ask me about it.

00:03:28: And i'm like...I feel like on your records as well.

00:03:32: so just before you go in we should do a little google even if its just the little google.

00:03:37: we have to know what our condition is instead of being completely blinded by it.

00:03:45: Does that worry him?

00:03:46: Your daily life?

00:03:47: I suppose not in my everyday life.

00:03:49: but say for example If ever need to get into bedoctas Its always first thought im going.

00:03:53: I'm gonna have to explain but i've got neurofibromatosis because they're not going to know.

00:03:59: So, I went to the doctor's quite recently for an issue that could of been linked my neurofibromatosis and... ...I went there and said.. ..'i am quite worried about this because it can be linked with my

00:04:10: NF-one.'.

00:04:10: And then like what is NF one?

00:04:15: It says on my record I've got NF one.

00:04:17: surely you can have a little research just before I come in and go.

00:04:22: okay so i've read that you got NF-one.

00:04:24: this is what NF one is.

00:04:25: Is this correct?

00:04:26: And then, yes it is because i feel like... That also puts your bit more at ease and felt a bit more understood about your condition.

00:04:32: yeah Because no one really understands the condition.

00:04:36: Like anyway You Go!

00:04:38: You Have to Explain I've Got This.

00:04:41: It gets quite tiring To Be Honest and Im Quite Lucky But I Don't Have To Give A Doctor's Quite Regularly.

00:04:47: but I Can Imagine For Someone's like, my friends who've got NF one but when they go it's a constant thing.

00:04:54: A constant saying I have neurofibromatosis.

00:04:57: this is neurofibromatosis and i suppose that feels you're pushed back because no-one knows what it isn't.

00:05:05: It feels like No-one takes the time to understand it And yeah...I feel its just that little bit of consideration would go along with way.

00:05:15: Yeah okay well thankyou for sharing.

00:05:18: Okay, currently you're in Barcelona taking part in the NF Academy.

00:05:25: What exactly is that?

00:05:27: Yes I think it's an amazing opportunity for those affected by NF-one and NF-two to be educated on their condition.

00:05:39: It also a great opportunity not only for family members a great opportunity for everyone to gain valuable knowledge about the condition.

00:05:53: Thank you and you like it, do enjoy?

00:05:54: Yes I'm

00:05:55: really enjoying it.

00:05:55: yes!

00:05:56: It's really informative and i've learned so much.

00:05:58: Yeah

00:05:58: You find new friends?

00:06:01: That is what we often hear from participants that its' like a new family Because of your understanding with your doctors...I think everybody goes through this same issues, isn't it?

00:06:16: Yes because everyone goes through like a similar thing even if they're not directly affected.

00:06:20: It's like... Everyone knows what its like!

00:06:23: Because

00:06:24: I've seen at first hand.

00:06:25: Yeah

00:06:26: yeah okay great and What do you want to do once you become an FM ambassador and receive the official diploma?

00:06:34: how Do You Want To Help Others?

00:06:35: So i wanted take my knowledge but have learned And i want to take that back to my charity.

00:06:41: so me and Becky, who's also come from a childhood tumultuous.

00:06:44: We've been taking notes in the lectures And we'll pass this information forward... ...and were going to use the information that we have learned and educate for rest of our charity about what you've learnt or gained from your experience.

00:06:59: I feel like since being here it has set light on my life because its made me want to educate more people.

00:07:09: From before, I've never really spoke about my neurophabematosis.

00:07:13: Like...I've never even spoken to many people but not many would know what it is.

00:07:17: so i'm just like- I don't need to tell them!

00:07:22: But since being here It's made me want to post about a lot more on social media.

00:07:28: So its maybe wanted spread a lot of awareness because I feel that I understand it as rare disease obviously because im part the charity stuff getting posted, because it pops up on my feed.

00:07:40: Because I follow them.

00:07:41: but if i've just realized... If I didn't follow the charity and I don't have an F-One then.. I had no idea what is.

00:07:48: so its made me feel like to take action.

00:07:53: Like that I want to spread awareness of my condition.

00:07:56: So when you go into a hospital You dont need to sit there for the first ten minutes of your appointment going.

00:08:04: I have neurofibromatosis type one.

00:08:06: This is neurofibromatosis.

00:08:09: Yeah, thank you.

00:08:09: I think that's an important goal for the ambassadors being here and going back home and being able to spread awareness.

00:08:18: And yeah Thank You.

00:08:21: So Jacob what would you say to your younger self if you could?

00:08:25: i'd say you can't blend in when you were born to stand out because I feel like this message from The Book Wonder which is about a boy with a facial deformity who can be taken of the neurofibromatosis conditions or linked conditions, or any rare disease.

00:08:43: Because obviously it is a rare disease and I feel like its where you were born in...the way that your created was to stand out.

00:08:51: And because we recreated to standout We should spread awareness.

00:08:56: There should be alot more knowledge about whats going on Because..we need make it stand-out Be more into public eye.

00:09:06: Obviously, neurofibromatosis is something that's not very well known about and I think it should be the opposite.

00:09:12: I feel like It should Be a lot more known About because i can Think of A few like rare diseases That have got lots Of knowledge And Lots of research Going into it.

00:09:22: Then I Feel Like Neurofibomatosis Is One That Hasn't?

00:09:26: Yeah!

00:09:27: I Feel We Need To Make It Stand Out.

00:09:30: So to your younger self you would say stand out?

00:09:34: Standout make a difference.

00:09:36: Good, thank you.

00:09:38: That's very beautiful and do you want to share any more personal thoughts or stories?

00:09:44: I'd like to share that.

00:09:45: if the people who have mild symptoms like myself It doesn't mean that your neurofibromatosis isn't as valid as anybody else is.

00:09:55: You've still got the condition And...you can take time to accept back yourself Like..You're not Like.

00:10:04: sometimes I personally feel like when i'm in a big group with people of NF.

00:10:08: I Feel A bit like Sometimes.

00:10:09: I put them like an outcast because everyone has these stories about they've had surgeries and all this, And I'd feel like...a Bit Of An Outcast sometime cause.

00:10:18: im like..Ive not gone through any of This!

00:10:21: And....i just want to let Everyone To know that Just Because You Haven't Gone Through All These Like Sergeries Or Anything That Your Neurofibromatosis Is No Little Than Anybody Else's.

00:10:33: Okay Thank you.

00:10:35: So, Mariam would you like to introduce yourself?

00:10:38: Hi.

00:10:38: Yes of course my name is Maria.

00:10:40: I'm from the Netherlands and grew up with an older sister that has neurofibromatosis type one.

00:10:46: Thank You so how did the diagnosis affect your family?

00:10:52: My sister was diagnosed when she was a baby.

00:10:55: Of course i cannot speak for my parents perspective but as younger sister it does not effect me at first.

00:11:00: She's just my older sister who looked up too.

00:11:03: However, there were certain things that I experienced like her visible fibromas the insecurities he experienced and a tradition to special education.

00:11:12: And as we got older our symptoms increased especially headaches, tiredness or mental health.

00:11:18: The disease began having an impact on not only us but also family.

00:11:24: Thank you!

00:11:25: I recognize some of what you say with my own daughter As i can talk about it Because you see the things, but you cannot do anything about it.

00:11:37: And that makes me sometimes feel quite helpless because I want to change it and make a world better for your loved ones.

00:11:45: That is sometimes quite hard... ...because we can't change

00:11:59: them or let them.

00:12:02: know that try to accept the disease, but it's also hard for us sometimes because we worry about their future.

00:12:10: But we are the most important ones... ...to support them in there thoughts.

00:12:14: Exactly yeah!

00:12:15: That is what were here for as a family isn't?

00:12:17: To support and love them.... And make them feel good about themselves.

00:12:22: At least thats whats I tried with my daughter.

00:12:24: Make her feel good by herself being accepted by ourselves.

00:12:30: Yeah, I agree.

00:12:31: Feel very strongly.

00:12:32: that's our job or task as family members.

00:12:36: yeah okay and you're currently here in Barcelona taking part in the NF Academy, twenty-five.

00:12:45: what exactly is there?

00:12:47: So it's a week long ambassador training course for young adults with NF type one or their relatives.

00:12:57: It's a program to learn about NF one, NF two and schwannomatosis patient advocacy.

00:13:03: And patient involvement in research on how we can deal with the challenges that they are facing?

00:13:08: Okay you like it.

00:13:10: I really liked.

00:13:10: yeah.

00:13:11: Yeah

00:13:11: i first hesitated to participate because i was.

00:13:16: i was um Hesitating about.

00:13:18: okay am i good enough To take the responsibilities after the academy?

00:13:23: and i didn't want.

00:13:25: i Didn't want to just do it.

00:13:28: So I actually waited until the last moment to write my approval and then, yeah.

00:13:48: all the young adults, so all of them ambassadors.

00:14:01: They are amazing they're inspiring and yeah I learned a lot.

00:14:06: it feels like we have another warm community.

00:14:11: that is what this isn't in afterwards you have your whole new family.

00:14:15: It's great experience.

00:14:17: You research yourself.

00:14:19: how do feel about other researchers has been done will be conducted on NF.

00:14:26: I think it's amazing.

00:14:28: We went to the hospital here in Barcelona and uh, The research they're doing is quite amazing And of course it takes time.

00:14:37: i think that's the most difficult part about research because we have to be patient and wait.

00:14:46: But i think they are doing amazing things and...we still have so much do this week also some specific ideas, but that idea kept coming and the topics kept calming.

00:15:00: And I'm like okay we this is could be nice and this would be nice.

00:15:04: so there's so much to do and elaborate in um We can learn so much from each other.

00:15:10: i think There are already a lot of things That are done But we just don't know if it

00:15:17: mm-hmm?

00:15:18: And I think that's also really important part because now we met A lot of different people Europe and in every country.

00:15:25: It's different And you can really learn from each other,

00:15:29: okay?

00:15:30: Thank You.

00:15:31: So you've seen your sister inner transition From childhood care to adult care.

00:15:38: Could you elaborate a bit on that?

00:15:42: so meant my sister was a baby.

00:15:43: She was already referred to a good specialist.

00:15:46: so luckily as a child it Was not hard to find someone with enough knowledge and the tradition too.

00:15:52: adult care went actually also very well as we already were being treated at a specialized center.

00:15:59: However, the focus was mainly on the neurofibromas and physical disabilities themselves while many additional symptoms emerged for which there was no specific treatment.

00:16:09: so we felt that there is not guidance or support to cope with these issues when it comes to mental health care.

00:16:16: So you feel like there's gap in transition?

00:16:20: Yeah I think We have a pretty good specialized center for adults.

00:16:27: Yes, we're both from the Netherlands and care is really well organized.

00:16:31: I agree with that And

00:16:32: i already learned that in some countries they don't even have a specialised centre For adults.

00:16:38: so i think were lucky to have one.

00:16:42: But sometimes when it comes to mental health or other symptoms there's A little bit of gap And I don't think it's only the responsibility of the physician, because i can understand from a medical point-of-view that the doctor is more focused on how he can do something and physically.

00:17:10: But as an association we have to look at making tradition better for other symptoms like how to cope with constant pain, how to cope with your mental health.

00:17:28: Exactly

00:17:28: in securities

00:17:30: and exactly

00:17:31: because

00:17:31: we know from the literature that a lot of people within have suffered from mental health problems?

00:17:38: Exactly

00:17:38: there's a lot Of depression A lot of HDHD.

00:17:43: So yeah I agree With it.

00:17:46: Yeah And i think We're missing out on It.

00:17:51: how many people are experiencing this, and what would they like to have as a support or guidance?

00:17:59: And maybe we can change the care pathway a little bit.

00:18:03: Or may be the physician has specific recommendations.

00:18:11: Are you aware of any NF-specialised psychologists in the Netherlands?

00:18:21: Yeah, I think that would be amazing and there should be one.

00:18:25: Of course a lot of diseases but it's the thing every patient with NF once faces in their life especially because its progressive disease.

00:18:41: It is important to know they don't have to afraid say ok my mental health isn't going well what can i do?

00:18:50: and not go to the GP first, explain their whole life story.

00:18:55: And then get fired back... ...and are afraid of asking for help again!

00:19:03: Thanks a lot for sharing all this with me & listeners.

00:19:07: So after all these insightful information I think it's time come to an end.

00:19:12: If you have any questions or feedback feel free contact us on any platform.

00:19:17: You can find our details in show notes.

00:19:19: Thankyou for listening.

00:19:21: Make sure to check out part two of our episodes where we talk to Ellie from Ireland and Nuria from Spain.

00:19:28: Two lovely ambassadors as well!