Hi everyone, we are talking about neurofibromatosis, a rare condition that causes tumours to develop in the body. The tumours are not usually cancerous, but it is still a condition that can lead insurers to take an extra look at the insurance application. There are three types of neurofibromatosis and each of them are reviewed by the insurers on a case by case basis, as the symptoms and affect on a person’s life can vary so greatly.

The key takeaways:

• Neurofibromatosis can cause difficulties for the skin, nerves, heart, bone development, balance, hearing and more.
• Neurofibromatosis can lead to other conditions such as epilepsy, scoliosis, deafness and vision loss.
• Two case studies of arranging life insurance for people living with neurofibromatosis.

This is our final episode of 2025 and I hope that you all have a lovely festive period and come back in 2026 feeling super refreshed and ready to learn more about protection insurance. .

Remember, if you are listening to this as part of your work, you can claim a CPD certificate on our website, thanks to our sponsors PlannerX.

Kathryn Knowles  00:11

Hi everyone. Alan is back with me, and we are on the final episode of 2025 and we’re going to be discussing and focusing on arranging protection insurance for people living with neurofibromatosis, this is the practical protection podcast.

 

Kathryn Knowles  00:39

So Alan, how are you doing? I am very good. Thank you. How are you Kathryn, I’m good. Thank you. And I think we should make sure it’s clear to everybody that, I mean, I’ve specifically asked you that because we actually, we recorded this episode yesterday, and we did incredibly well. It was really, really good episode. And at the end of it, you did turn around to me, so you didn’t even ask me how I was. At the beginning, I felt a bit put hours because bit put hours because I usually ask. And then, to really top it all off, I’d had the microphone on mute, so we spent a good 3040 minutes chatting for it to have not actually recorded anything.

 

Alan   01:12

We said, yeah, so that means we should be super efficient today and get this done in five or 10 minutes.

 

Kathryn Knowles  01:16

That is, well, I was gonna say I did think, you know, it’s gonna be really super efficient, but they’re not going to hear us giggling and potentially giggling over your pronunciation of some of these things, which

 

Alan   01:26

I am pretty certain I’m still going to so don’t worry. I’m sure you’ll still be able to have a giggle at me.

 

Kathryn Knowles  01:31

I’m sure we will. Okay, so we’re going to be talking about neurofibromatosis. So you do have neurofibromatosis type one, neurofibromatosis type two, and schwannomatosis, and that last one, the schwannomatosis, is more of a recent classification of a type of neurofibromatosis. And when I say recent, it doesn’t mean it’s like, you know, in the last six months or something, it has been around for quite a few years, but it is just something that, in medical terms, is quite recent compared to the other two. It is a rare condition. And what was really interesting for me, and I’ll possibly pipe up with this every now and then as we’re chatting, is that whenever I do these episodes, obviously we have the research and what we’ve done in terms of helping clients, but I do like to research the condition itself, even more so than I would usually do, and it’s actually really, really hard to find information from what I would classes reputable resources. Now, if you are an organization and you do cover information about neurofibromatosis, you might be thinking, hang on a minute. What’s she on about? It’s just sort of for this kind of forum and for giving out this information with it being CPD able. I really do like to make sure that the sources that I’m looking at are ones that I know have a sort of a really good quality mark, that they are legitimate organizations, and not ones that are just kind of more of a sort of like an opinion based type information source. So with neurofibromatosis, it’s where tumors generally it’s where tumors are growing within the body. Now it’s either it can be inside the body, it can be quite obvious, it can be something that isn’t particularly obvious, and it can happen in lots and lots of different paces, and it is something that tends to get worse over time. Now the really, really positive news is that it’s usually these tumors are not cancerous. It is possible that they can become cancerous, but that’s not the normal side of things that would be more of a rare aspect of the condition. And different conditions do different things, and they all can kind of like the symptoms can branch over to each other, but generally with neurofibromatosis type, one, that is usually to do with you’d see symptoms and presentations with the skin, sometimes with bone development, sometimes like cardiovascular heart involvement and some other areas with neurofibromatosis type two, that tends to be more where tumors have been developing within the head, so it’s going to be affecting things like the hearing, the balance, possibly control of facial muscles. And with the schwannomatosis, that’s more to do with tumors are developing in areas, and that causes more of like a chronic pain, potentially numbness. Now, as I say, the condition can be can have quite an impact on somebody’s life. It might not do, but if you wanted to sort of see someone who’s done a lot of raising of awareness of the condition, there’s a British actor called Adam Pearson, and he has a very visual development of neurofibromatosis in the facial area. And not, I’d say not everybody would be in that kind of a level. So it might just be that they have, like a tumor or a little lump underneath the skin, and you just wouldn’t know at all from looking at the person, but Adam’s a really good example of showing how his condition can potentially present itself. So Alan, let’s go. So through neurofibromatosis, what is it? What are the kinds of things that underwriters are looking out for?

 

Alan   05:06

Yeah, no, absolutely. So I guess we’ll start with pronunciation on my side. And let’s, let’s see how close I get to this. So the condition originally was called, you’re looking at me now I am looking at you, making me nervous. So it was originally called von recklin house, and disease, nice.

 

Kathryn Knowles  05:26

That was much that was much better than yesterday. Well done now.

 

Alan   05:30

And that was based on the person who effectively discovered the disease. It was a pathologist, Friedrich, Daniel, von

 

Kathryn Knowles  05:37

recklin house. And I feel like you’re really trying to say that surname now, again, as a matter of pride,

 

Alan   05:43

principle, absolutely,

 

Kathryn Knowles  05:44

yeah, because you were close, much closer than yesterday,

 

Alan   05:48

very unlikely that you’re going to get that as the diagnosis a disclosed condition, because it’s been known as neurofibromatosis for quite some time. But obviously it’s just, just helpful, just to know. So you know, as you said, there’s three different types of neurofibromatosis. We’ve got NF one, neurofibromatosis type one. We’ve got NF two, and we’ve got the schwanner schwannomatosis, schwannomatosis. Now the most common one, and the most common that we see, is NF one. Now the good thing about that is that NF one is probably deemed to be the least serious of them. NF, one is where you typically get the tumors that grow on the skin rather than internal. It can be tumors like you mentioned, Adam Pearson, for example, which obviously are very visual. Can also be things like Kathryn or late spots, which is French for milky coffee. But I

 

Kathryn Knowles  06:41

don’t normally leave anything to that coffee. That coffee with milk.

 

Alan   06:45

I’m happy to be corrected on that one. And obviously that’ll just be because of the color of the spots you can get freckling in the armpits and the groin area, things like that, bumps under the skin, and these leash nodules that can appear on the eyes as well. Now it can really range in severity from being kind of super mild, you know, somebody with just maybe one or two of these, you know, sort of external tumors, to some people where, you know, their entire body is almost covered with these. So it really can be a huge range. Nf two tends to be more internal. These tumors tend to grow more on the sort of like the balance and the hearing nerves. So you can find that these tumors might be things like acoustic neuromas, for example. And I guess what’s quite interesting with NF two is that you know much more, rather than the actual condition, Neurofibromatosis Type Two, it is more the tumors that you’re going to get underwritten on and looked at. So if you’ve got somebody, for example, who’s got an acoustic neuroma, which is a benign brain tumor that affects the hearing and auditory side, it’s a benign brain tumor, well, if somebody’s had a recent diagnosis, or if this tumor has been growing, you will struggle to get life insurance. It is going to be the same sort of thing for someone with NF two, if it’s been there and it’s been stable for a long time. Well, actually, that hugely increases the chances of being able to offer cover. But you do find that NF two can affect the balance and can affect people’s hearings the honorators. This is one that we’ve seen a lot, a lot less of, obviously, newer condition and rarer that tends to sit on the peripheral nerves. It can, it doesn’t really tend to cause the hearing problems and things like that, but it can cause things like chronic pain. So chronic pain symptoms, for example. And I guess a good kind of parallel to draw with with that one is because actually, you know, when you’re looking at things like life insurance, you might think it’s not such a big impact, you know, but actually, if you look at a condition like fibromyalgia, for example, which is all about chronic pain, where you could get somebody who gets standard rates, or you could get somebody who gets declined, and it’s a lot about how people manage those symptoms, how bad they are, what the effects on their their life, you know, I guess generally, are few of the factors. There’s no cure for, you know, for neurofibromatosis one, two, or the Schrodinger metals this. It’s just a condition that gets managed, you know, possibly by surgery, you know, or whatever else is needed to help these people. And another thing that can come along with these are things like mental health, and especially if you look at NF one, for example. You know you could have somebody super mild single tumor. Nobody knows. But actually, if you’ve got somebody who’s for example, has a lot of tumors that are very visual on their face and their upper body, for example, well actually, you you can find that people will struggle from, and I’m saying this is for everybody, but some people can struggle from a mental health perspective, because obviously, you obviously, you know, people are mean, unfortunately, and can say things and you know, so it can cause that sort of anxiety side

 

Kathryn Knowles  09:51

I was gonna say as well. A lot of this to start to present, either in childhood or in your teens, early, early adulthood. So you know that prime time where, if there is. Something that makes you, visually, you know, look different to other people. Then for any of us, depending upon what makes us stand out, it can really, really, it can be something where people would make comment potentially and not, not necessarily be the teenage kids aren’t necessarily the nicest people in the world. So, you know, obviously that is quite understandable, that there can potentially be some mental health aspect there. So that could be something the underwriters do ask about?

 

Alan   10:25

Yeah, absolutely. So that probably leads me on, I guess, quite well, on to what type of things do insurance companies want to know? So when diagnosed is an obvious one. That’s always something you know, obviously, if it’s been diagnosed a longer time, it’s usually better because you’ve got a history there to look at. You typically find, as you said, that NF one is diagnosed younger, because, especially if it’s a more severe presentation of it, that they will realize, and they’ll be able to see that NF two schwannomatosis can be later in life. Because effectively, unless there’s a reason or something crops up as to why you’re going to get checked for that. You’re probably not going to know about it, potentially, kind of thing, you know, if it’s NF two, asking how many tumors, you know, and where these tumors are, you know, Amy stick, the mentioned the acoustic neuromas, for example. There’s another type of tumor that’s quite common with them, and the name has completely escaped me, but effectively, asking about these kind of number of internal tumors is really important for that and also, how long have they been there? How many scans have they had? Have they grown? Has there been any surgery on them? These sorts of things for neurofibromatosis type one? Yes, you can ask how many tumors and things like that they get, things called neurofibromatomas as well, and obviously these caffeolate spots. You don’t necessarily need to know every single one of these in the full number, because for some people, you know, it could be hundreds, but obviously you are probably looking more at the actual tumors, and again, that kind of growth side, you obviously want to check and make sure that nothing’s become cancerous. That’s even though that is very rare with these conditions, it’s obviously still a risk. And something that insurance companies will definitely ask where the tumors are, again, is probably more relevant for the neurofibromatosis type two, because, again, you know that can make a bigger impact depending where around the brain, etc, they would be any surgery to remove. How’s that been done? How successful was it? Are they needing annual screenings? Is it something so you know, somebody with internal tumors is much more likely to be having annual checks on these. If somebody’s got, you know, NF type one. Well, actually, some people are just discharged, you know, they don’t need to have them. It’s just a manageable condition. They don’t need to have it sort of checked. And then we get on to, like, the lifestyle that the sort of, the management and the other effects that these can have. So ability to work, you know, is the condition preventing somebody from living a normal, inverted commerce life? You know? Is it stopping them from working? For example, is it causing lots of time off work? We mentioned mental health? Has that been, been sort of a factor involved in this? I guess, less likely, but, you know, mobility aids and things like that, again, depending on the location of the tumors. You know, all these types of things can present other risks that insurance companies will want to know about. And I think that’s one of the things that I find most interesting about neurofibromatosis with it is it’s it’s not necessarily the condition itself, that’s the issue. It’s the impacts and, yes, and the secondary conditions that can come with it that are more likely to cause the issues. A few of the things that might come up, things like seizures, for example, epilepsy, we mentioned loss of hearing, loss of sight, frequent headaches and potentially scoliosis as well, like curvature of the

 

Kathryn Knowles  13:56

spine, things which each of those things are disclosable in a protection insurance application in their own right, usually for the most part. So, like you say, it’s not just the this condition in itself, you know. And I think if somebody, if you are looking through an application, and we think I have no idea where to put neurofibromatosis, it is one of those things where go back and look again, because it will be something that will pop up somewhere in this kind of application at some point. Yeah, absolutely. So in terms of, you know, I think we’ve covered, obviously, some really, really good parts with that, and in terms of, when you were saying about, like, the schwannomatosis and the chronic pain you like, and it’s fibromyalgia, and I think that’s probably a really good example there, because I think more people will have come across Fibromyalgia than senior pragmatosis. And what we’re saying in terms of, like, that impact to life, you know, you’re saying about the ability to work or do day to day things, you know. So even things like, you know, can you do day to day? Things like, can you go shopping? Can you cook yourself meals? You know, that’s all the. Same kind of thing of, you know, how much does this affect this person’s life and ability to be independent? That’s probably a really good way of mentioning it.

 

Alan   15:07

Yeah, because if you’re not independent, and if you’re not able to go up to the shops yourself, and you’re not able to and work, you know, is one, but it doesn’t have to be work. You know, you’ve got almost these activities of daily living have, yes, activities of daily work. Well, actually, if you’re in the house all the time and you’re not going you’re not getting out, well, you’re not getting exercise, that means mental health is possibly more stretched as well. So they’re all additional risk factors that will factor into a decision that’s made as well.

 

Kathryn Knowles  15:31

Yeah, and that’s what I was thinking and going to lead to in terms of the long term implications and thoughts from the underwriters point of view. Because, you know, when somebody isn’t able to, as you say, possibly go out to work or even just go out and about, you say, just moving the body, being amongst other people, getting a little bit of exercise in at least, then that, in itself, can start to really lead to a whole host of other conditions as we get older, which can very much affect, potentially, life expectancy. And that was another thing when I was doing a lot of this research, which was, which was really interesting, is that there was, there was nothing that I could find inside the UK that gave me a really definitive insight into whether or not this condition can affect life expectancy. And and I usually do have a look at it. And obviously, if there is something where I think, okay, that that is potentially going to be something that can affect how long someone can live for, I will try and mention it, obviously, in a sensitive way. And, but I could find stuff from America. I could find stuff from the UK. But based upon studies that were done in Denmark and things like that, even the World Health Organization was a real generalization. There was nothing really kind of specific. So I think again, when we’re saying the condition versus the symptoms, in terms of life expectancy, obviously, if you’ve got tumors growing in the brain, and they’re growing at quite an unstable rate, then that, as with anybody who has a tumor in the brain, regardless of it being you at five mitosis or not, that’s possibly going to have a bigger impact on the life expectancy than, say, somebody who has a small, very, very small tumor just under the skin on their wrist. So it’s very, very hard to try and classify that in terms of the life insurance sides of things, but you do have insights, don’t you? For us in terms of the underwriting expectations, I do indeed, and I

 

Alan   17:23

guess the good news with with neurofibromatosis as a whole, is each product can be available. Now, I say can be because it’s such a hugely widely variable condition, even just between the different types, but between the individuals as well. So obviously every case is going to be a little bit case by case looked at the individual, but you can potentially get everything. It’s not like some conditions where it is just you can never get this cover no matter what. So I guess there’s a bit of a rough guide for it. For NF one, for life insurance, you can potentially expect standard rates, maybe a small loading for a small, you know, for more serious cases, but actually, we’ve seen a number go through now at standard rates, potentially similar for

 

Kathryn Knowles  18:11

swannamata, but I do I’ve said that that’s actually pronounced, but I’m assuming so.

 

Alan   18:17

And you know, for NF two, you are more likely to see a small loading of some description. You’re also more likely to start seeing postponements or declines, depending upon where these tumors are. But again, for someone you know, kind of very stable with it, or, you know, who doesn’t have too many tumors, and they are quite, quite stable, then actually, you know, potentially good offers on the cards, critical illness, cover, again, it’s always tricky. Neurofibromatosis type one, you could be expecting standard rates, fantastic. Nf two, potentially, and I say very, very loosely, potentially on this, you could expect cover, but maybe with a deafness exclusion. In my experience, most of the clients we’ve seen with NF two haven’t been eligible for critical illness cover because of things like the acoustic neuromas, for example. But there is potential. It’s just a little bit slimmer, income protection potentially an exclusion. So you know, we’ve seen NF one offered with exclusions before NF two. I don’t think we’ve actually approached anybody, necessarily to try and actually apply for cover, but we’ve definitely asked about it, and again, we’ve had indications so very, very case by case, income protection is always an interesting one, though, because you have always got things like simplified income protection and accident and sickness policies where they are more guaranteed acceptance, or sort of semi underwriting policies that have pre existing health condition exclusions. So, you know, there should be options, even if it does come with some form of an exclusion for those customers. So, yeah,

 

Kathryn Knowles  19:55

I think it generally sounds very pot, considering that we’re talking about growth, you know, in the. Body, and potentially in any number of areas in the body, considering there is a potential for standard terms at times, that’s That’s fantastic, I think, as well, it is that thing of you know, if you are talking about income protection with your clients, you know the majority of the time when we talk about health conditions, and you know, they’re not in shows are not going to cover claims that are related to that original condition. And it’s really, really really important to be aware of that. I mean, obviously, things like mild asthma, mild hay fever, things like that, they’re not going to be potentially, you know, they’re not generally excluded. But when we have a diagnosis like this, and I think, because that’s that’s often, I think one of the biggest stumbling points is because people are like, well, but I want that to be covered and, you know, and obviously, unfortunately, it won’t be, but there is still such a host of other times and situations and scenarios and and situations that are probably far more likely to happen than them not being able to work due to neurofibromatosis, you know, I

 

Alan   20:53

think, I think you’ve got two different types of people there as well, but you do have some who, well, that’s going to be the only thing that keeps me off. So why would I want cover if I’m not covered for that? But actually, you also have a lot of people who say, well, it complete opposite of that, which is, well, I’m not worried about that, because I’ve had that all my life. I know how to manage that. I know how to control that. Like you with your hypermobility, for example, you know you would be very much Well, I’m not going to go jump out of a plane. I’m not going to go, you know, for a 10 Mile Run or so. You wouldn’t want to do that anyway, but you know you wouldn’t want you would, you wouldn’t do things that would put yourself in a riskier circumstance. For that, you self manage a condition. But it’s the unforeseen. It’s the unknowns that actually are the worry. What happens if you get cancer? What happens if you, know, fall down some stairs or something like that? It’s those absolute unforeseens. But it’s our job as advisors to make see people realize and see that as well, absolutely.

 

Kathryn Knowles  21:43

And I think sometimes as well, when you have people in that situation, if you’ve got somebody who said, Well, you know, like you said, that opinion of, well, it’s never stopped me before. So I’m okay about it. I’m obviously, I thought I’d prefer it not to be there. I’d rather not take solution. But, you know, fair enough, I’ll still take it, but with the other people who so I say, Well, I want that to be covered. I mean, let’s face there are times that you are just going to not be able to convince somebody of that, you know, and that’s completely up to them, and it depends on what they’re they have their confidence in, in terms of the products. So we’ve got a couple of case studies and for everybody, and just to show sort of like, what we can maybe expect. So first one is neurofibromatosis type. One person diagnosed in early childhood, and we spoke to them in their late 30s. They were a non smoker. Now, this person, they only had a couple of nodules, did not need any treatment, and they didn’t need any regular follow up. So that’s a really key thing, like Alan was mentioning, in terms of the annual screening, is that you could say to somebody you know, do you have to have annual screening? Do you attend it kind of thing, because there’s a big difference between, you know, do you attend annual screening? Well, yes, because I’ve been asked to or no, because they just don’t want to see me. And obviously, in this person, they didn’t need to be seen. So we were able to arrange decreasing life and critical illness cover for 373,000 pounds over 25 years, at around 109 pounds per month. And then we’ve got a life insurance. Example, again, somebody in their mid 30s, non smoker, and they’ve been diagnosed with neurofibromatosis type one about 10 years before the application. They actually only had one tumor. And so it’s something where, with this condition, it is usually diagnosed in childhood, in early teens. So for this person to be diagnosed in their mid 30s, it does really indicate that the condition is a very, very mild version of it. And one thing we didn’t mention this time, but we did cover yesterday, is that this is a genetic condition, so it either is, has been heredited, inherited, inherited. Inherited. Okay, it has been inherited from one or both parents. Or it’s actually something that’s happened at conception. You know, this isn’t something that’s just going to randomly develop in the middle of life. This is something that will have been there from day, dot, kind

 

Alan   23:57

of thing. The other interesting part about that as well is NF one does not lead to NF two. They are completely different genes. These are, in essence, different conditions. So, you know, one doesn’t just develop into the other

 

Kathryn Knowles  24:10

Absolutely So, so with this person, say, one tumor. So it’s been very, very mild. But also, they’d had post traumatic stress disorder about six years before we did the application and but that had been resolved for quite a few years for them, and the insurer was able to look very, very favorably upon that which was, which was really nice and positive to see. So for that person, we arranged level life insurance of 120,000 pounds over 25 years for a little under 12 pounds per month. So when we always talk about these things, and so I say about potentially standard terms, potential ratings, the actual the life insurance premiums, are usually like this. You know, it’s very, very small. So if there is a change a lot of the time, it isn’t as bad as people expect. So it’s always worth asking. So thank you for listening, everybody. Thank you for joining me,

 

Alan   24:55

Alan, thank you very much for having me the

 

Kathryn Knowles  24:56

second time. Absolutely. I just hope that we’ve said. Everything that, because it was such a good one yesterday. And I think, have we missed anything this time?

 

Alan   25:03

There was some joke about me becoming more Yorkshire when I came Oh, yeah, I can’t remember why it came up, but I’ll say it again now, basically, but whenever I go to London, I always get a lot more Yorkshire than what I do when I’m here. And I don’t know if it’s

 

Kathryn Knowles  25:18

just, I don’t know why I do it, to be fair, very proud all of a sudden

 

Alan   25:21

being, rather than try and blend in, I just just become that, almost,

 

Kathryn Knowles  25:26

that this, this all came from your very initial attempt at saying the surname, the Gemma pathologist, early in there something to do with a cafe or late as well. I think I said, Oh, yeah, you did say something about that as well. You said it in quite a northern cafe or late, yeah, absolutely the kind of thing. If we could go to France, I go, I’ll do the talking. Yeah, exactly. Well, yeah. And also, embarrassingly, I start doing a French accent, which is really, really not okay. But for some reason, when I go to a different country and there’s a different accent, I try and mimic the accent, and I don’t mean to at least try and speak the language as well. I know then it’s okay. That’s the thing. I’ve realized that I did it once in English, but tried to speak in a friend, and I was just like, oh my god, I can’t believe I’ve just done that. Okay in France again? No, no, absolutely. So I say, Thank you for coming. This is the last episode of 2025 I hope you have an amazing festive break and you are back refreshed in 2026 to learn even more about underwriting and different developments we are seeing in the protection insurance industry. Please do visit the website practical hyping protection.co.uk to get your CPD certificate and to get obviously listening to any other episodes if you need to get that CPD in before the end of the year. And that’s all. Thanks to our sponsors, planner X bye. Everybody. You you.

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