Bonus Episode- Living With Neurofibromatosis Type 2 with Will Ruddell

A rare diagnosis can sit quietly in the background for years, until one day a scan makes it real. That’s what happened for Will Ruddell, who joins us to share his life with Neurofibromatosis Type 2 (NF2), a rare genetic disorder linked to slow-growing tumors in the brain, spine, and along nerves. Will grew up watching his father deal with serious medical issues, then found out at 26 that he also had NF2 after a migraine led to an MRI and life-changing answers. 

We talk honestly about what happens after the words “you have tumors” land: the scramble to find the right specialists, the stress of navigating care without insurance at first, and the reality that NF2 is still not fully understood. Will explains symptoms that shaped his everyday life, including vocal cord paralysis from a neck tumor and nerve damage that affects hand and foot movement. We also get into mobility decisions, surgery timing, and why “preparing” is hard when progression looks different for everyone. 

Beyond the medical side, we focus on what keeps a person steady. Will shares the role of his wife and family support, how passion and motivation help on difficult days, and where to look for NF2 resources, support groups, and research programs like the team at Moffitt Cancer Center. If you want a clearer picture of NF2 symptoms, treatment options like infusions and clinical trials, and how to show up for someone living with a rare disease, this conversation is for you. 

Subscribe, share this with someone who needs it, and leave a review so more people can find these stories and this information.

Transcript

Welcome And Guest Introduction

SPEAKER_00 0:01

Hi, thanks for joining the SJ Child Show today. Listeners, I'm so happy to have you. Thanks for being so supportive. Thanks for those of you who write in and send messages that the content is bringing you value. And I just want to thank you for your study, you know, support. Today I have an exciting guest who I'm really looking forward to learning more about and seeing how we can support overall. I have Will Rudell. And Will, it's so nice to have you here today.

SPEAKER_01 0:36

Hello, it's it's nice to be here. My name is William. I'm 33. I have uh a disease called neurofibromatosis type 2. Just a little bit about me. I um I got ferrets.

SPEAKER_00 0:54

You're kidding. No. Will you're my perfect guest today because I have a teenager who really wants a ferret. So after this, we are gonna deep dive on that conversation.

SPEAKER_01 1:06

There's a lot to talk about there for sure.

SPEAKER_00 1:10

But you know, thank you so much for coming and sharing your story today. You know, let's start from the simplest place. Let's start from the beginning. Tell us about how you found out if this is a condition you're born with and and more about it so that I can let my listeners know and so that they can do their own research or support those who may also have the same, you know, life experiences.

SPEAKER_01 1:37

Yeah, so uh growing up, my father had a lot of medical issues when I was like 13. He had spinal cord surgery, his like cervical spine. At the time, there wasn't a whole lot known about NF2, the neurofibromatosis. So the doctors would rush and think it's cancer because they find you get turt, you get tumors like a long ear central nervous system and stuff. So they'd see a tumor and they'd want to react right away. So my dad was obviously worried, had surgery. So, like growing up, I I knew quite a bit about it. I didn't know for sure that I had had anything until I was I was 26 when I found out that I had it for sure. But I had grown up like knowing a decent bit about it. His mom also had it. It's a it's a hereditary condition, 50% chance that it passes down. So at the time his mom had it, there was really nothing known about the disease. It's a pretty rare disease, and it's still you know something that they're trying to figure out.

SPEAKER_00 2:40

Yeah. And tell me what it's called again.

SPEAKER_01 2:44

It's called neurofiber mitosis type 2.

SPEAKER_00 2:48

I'm writing that, or I'm typing it. Thank you. Wow. How um yeah, where where do where does it even begin? So you're 26. What type of symptoms started happening that you realized that you needed to figure out?

MRI Diagnosis And Next Steps

SPEAKER_01 3:05

Yeah, so well when I was younger, I was is definitely something that was like uh kind of in the back of my head a lot because I had I have I don't know, I guess you could probably see that pretty well. You see this like bumpier. Yeah, I have some tumors like around, and so it's a it's a pretty big sign that I probably had it. I mean, it could have been something else, but from like my teenage years, I was always kind of worried about it. So when I was 26, I had this like really weird migraine, and I was used to having headaches all the time, and I just kind of like freaked out and was thinking it was related to that. So I went to the hospital, I told them about my dad's disease, so they immediately started. The first thing that did they do to diagnose it is do uh an MRI of your brain because there's you can have NF2 and not have a lot of the different types of tumors. I just happen to have everything that you can have really, but almost always you have the the brain tumors. So they they did a scan right there at the hospital. I found out I had the brain tumors, which pretty much just confirmed it right there, and that was the start of me. That was in 2019 where I first like started like the whole process of figuring things out, like medically.

SPEAKER_00 4:24

Wow. And are how what did they how do they start to begin the process? Like, are there you know, talk to us about what that looks like. Um I I looked up the name and put it up here so that my viewers can see if they have the you know have the information to to look up and know about it. Very rare.

Insurance Challenges Finding Care

SPEAKER_01 4:47

Yeah, so it it's um it was a lot at the time. I didn't have insurance. At the time, you know, they didn't really, you know, you go to the hospital, they just send you around. So I I bounced around a couple times. I'm sorry if you hear that at all. I there's a spheric planned no problem at all in a stack over there, so it might get a little got it.

SPEAKER_00 5:10

Now there's no problem at all.

SPEAKER_01 5:14

So they bounced me around a little bit. I got a lot of information. I was advised I really need to get insurance basically. But they told me, you know, more about the disease. It's a a mutation in the NF2 gene. I think it's chromosome 22, just like causes this issue where you get slow-growing tumors. So they they form at birth, but some of them don't like ever grow, and some of them it's just like it's really just walk, right? Like I have a bunch of them in my spinal cord, and some of them I do scans like regularly, and they don't they don't show any growth, and sometimes they do. But it's a lot of information at first, and eventually they set me up with I go to Moffitt Cancer Center, even though it's not cancer. They have a whole program in Tampa here where they do research, and they have a whole team that takes care of like they're working around this disease and and also NF1. So that was kind of the start of it. I it took me about I didn't really have so I did find out that my issue with my head wasn't even related to the brain tumors or anything. I think it was just sinus problems, it just wasn't bad. So I didn't really like rush to go over there. I waited, I got insurance, and eventually I just started having an issue with one of my fingers, and then then I started going there regularly, and I've I've been going since 2019, like a lot.

Symptoms Voice And Limb Weakness

SPEAKER_00 6:47

Yeah, wow, it sounds like like a lot that you have to deal with. What type of symptoms do you suffer from in your daily life?

SPEAKER_01 6:59

So, one of the first things there's things I realized that I've had issues with that I didn't even realize until I you know I got older and I had these issues like my voice. I found out around 2020, 2021 that I have a paralyzed vocal cord because I have a tumor in my neck, is it killed one of my nerves essentially? Yeah, uh, so one of my vocal cords just doesn't open. And I've always had like kind of, you know, my voice has been kind of weird, and I just thought I had a weird voice, and so that's something that's been affecting me for yeah. But one of the first things that happened when I really started going to Moffin and doing the testing like regularly was I had a finger that would it just went like open all the way, like I couldn't move it back on this hand, so it just started with a finger and then it became you know multiple fingers, and so slowly I've lost some some movement in part of my body. That was a lot of what was going on when I first started going there and why I you know I continued to go there afterwards to figure out what's going on.

SPEAKER_00 8:04

Yeah, and you're pretty young. I mean, 26 is still really young in your beginning of your life to yeah.

SPEAKER_01 8:11

I mean, I am 33 now, so I've been going through it for a bit. It was definitely a lot for a while.

Self Care Passion And Support

SPEAKER_00 8:18

Yeah, how have you learned to manage what you need to? What are your daily practices that you can help listeners that may, you know, not know how to have a good day? What are the things that you could tell people to that you help yourself with with your self-care?

SPEAKER_01 8:40

Well, things that I don't know. I think it's important to have things that you're really passionate about to just like help motivate you to to keep going on. I think everyone needs that. Definitely needs the support system, it's huge. I have my wife. My wife's been, I don't know what I would have done without her because she's she's uh treating her and my brother, it's really all the family that I have right now. That's that's local, anyway. I do I do have uncles that are I don't know how to say my uncle also has been huge, and my aunt has been huge support. My uncle also has a disease. Okay, he lives in Maine and he goes to doctors over in Boston, and I've seen one to get another opinion too, because he's got a big team over there too. But so I think support is huge, and just having things that you really are passionate about, just I always am huge on things, can always be worse. There's always, you know.

SPEAKER_00 9:35

Yeah, yeah. And sometimes you learn about just like today, other you know, people listening, learning what you're going through. They could be thinking, wow, you know, things definitely could be worse. And it's it's just we really have to honor and dignify each person's human experience and their journey. And so I love that we can chat today and and learn more about this. What type of research and you know, care needs to happen and how much is still unknown?

SPEAKER_01 10:13

Um, a lot isn't known. I mean, there's no cure. They do do a lot of research, like they I've signed a waiver a long time ago that they can, you know, test my tumors that they remove or or whatever, and they have a whole team there where they're doing that. I was on a I was on a trial drug that involved the doctor over at Boston Mass. And so they're trying a lot of drugs that work with like certain cancers because like it's not cancer, but it's still the tumors, so they they definitely try a lot of similar things. Like there are people that get radiation done for this, and you know, all kinds of stuff. I I get infusions regularly over there, but it's just I don't know, it's it's a lot, it's a relatively new thing. They're trying all kinds of medications and stuff, and I don't know, they have a whole research team over there now that is pretty recent, specifically dealing with this for the last couple years.

SPEAKER_00 11:14

That's great. Do they have like a general website that I can put up that our viewers and listeners can go to to learn more and to support?

SPEAKER_01 11:25

I'm sure that they have information on the disease on there. It's just Moffitt, Moffitt Cancer Center in Tampa.

SPEAKER_00 11:32

Okay.

SPEAKER_01 11:33

We have a huge website and everything. I'm sure they have information on the disease itself.

Father’s Story Lifespan Questions

SPEAKER_00 11:37

And yeah, absolutely. I was just looking up, looks like there might be like a out of the UK, like a kid a page that talks about it a lot too. So, but it's always important, I think, that we bring these types of issues and discussions to the forefront because a lot of times these invisible conditions and diseases go without so much acknowledgement and understanding for the community. And so we just thank you so much for you know sharing these types of these types of things. So it sounds like like, you know, growing up and you probably saw your dad struggle and go through things and you weren't at the time maybe suffering as much. Did how did that relationship with you two is you know, is he still with us? If I hope you don't mind me asking, and if you know, how did that did it does it affect your lifespan?

SPEAKER_01 12:43

No, I don't mind you asking at all. He so my father's not around anymore, he's been gone for almost 10 years now. Sorry. Uh he trying to think. Sorry, I lost my train of thought a little bit there.

SPEAKER_00 13:00

No, I was just wondering if it affects your lifespan, if that was the cause. Or that contributed maybe, right?

SPEAKER_01 13:08

It doesn't. He so it's not something that affects you really when you're younger. So when I was younger, like maybe my voice was bothering me, maybe I had some you know little issues. But because you start out with the the tumors, and it's like usually when you're in your 30s or 20, like 20s, you start developing more issues. Like I was I was like 28 when my left hand started stopped working. Like I can't I have nerve damage in my hand, I cannot move my wrist up at all. I can't move my hands up, I can close it. I got the same issue with my my left foot too, where I can't lift my I can lift my leg, but I can't lift my foot. Yeah, so so it's not something that bothered me when I was younger. My dad, he he was told originally that he would never walk again when he had his surgery, but like I said, it was it was a different time where everyone thought he was, you know, he had cancer for a little bit. But he he, I don't know. I I wish that I was more involved then. I mean, I was obviously a kid, and I just didn't really want to think about it because I was you know anxious about it. And I mean, my dad did okay. He definitely did okay, like he was able to do things he liked, he could drive, and he was on disability after the surgery, but yeah, he lived, he lived pretty happily. He he had a heart attack, he was a smoker, like really bad his whole life. So they definitely think that was a big contributor. It's definitely never doesn't help when you really got other issues to be doing that. But the disease doesn't end your life earlier, it just causes issues with you know the tumors in your brain. Like I have like my facial nerve is kind of messed up and stuff, like kind of deteriorates some things, but it's it's not really gonna cause like just like it's not terminal, I guess.

Mobility Aids Surgery Preparation

SPEAKER_00 14:59

Yeah, but it does cause mobility issues. What types of mobility like support do you need now that you suggest people might get early in finding out about it?

SPEAKER_01 15:14

So it's it's tough because it's it's different for everybody. I have issues. My my uncle's in his 60s, and he's he doesn't have some issues than I have, and I definitely don't have some issues that he has because obviously he's been you know he's older and he's got more growth, but so it's hard to say. You can't really prepare. Yeah, but I do have I mean my last surgery I had spinal cord surgery a year and a half ago. I had a walker for a little bit. I do have a wheelchair, I did use it a couple months ago for a concert because I can't for that long, yeah, but generally I'm okay without it. I was gonna get a cane. I have a tumor in if you can see that I've got tumors in my hand. Yeah, but using a cane is kind of tough. Sure. I was gonna get these removed so that I can try to be better about walking, and then I found out I have this other tumor that grew and now I'm having surgery next month. But wow it's hard to it's hard to prepare, but there are definitely things that you can always do. I mean, nothing that you're not gonna overnight, you know, wake up and not be able to, you know, nothing is it's quickly acting or whatever, so you can kind of prepare as things progress, but not really beforehand, I guess.

SPEAKER_00 16:31

Yeah, this is really great information. I I appreciate you being so forward and and vulnerable about it, and it it's it's just so it's so hard to know, you know, what so many people are going through, and just by understanding that you know this is something that is hereditary and more than just you in your own family line are affected, and and that's more reason to get the information, hopefully more research going, you know, and more understanding. Are there any since it is a little bit more unknown, do they have like you know, a day uh that they say awareness day for this or whatever? Maybe we'll rally them for that to get it more known.

SPEAKER_01 17:25

Yeah, I'm sorry.

SPEAKER_00 17:30

No, you're fine. You know, sometimes they do like autism day or attack awareness day or things like that. So if they don't have an this a day for this, we need to make them make one.

Support Groups NF1 Comparison And Advocacy

SPEAKER_01 17:42

I to be honest, I think that there is. My mom used to follow some of that stuff a little more. I think that there maybe it's not an official thing, but I think there is a thing. I I'm not certain.

SPEAKER_00 17:54

And how about support groups? Are you part of any support groups? Um sounds like your mom may have been or known that there was a little bit more of support and out there are there groups that you know of that you might not just be a part of or anything, or there definitely are.

SPEAKER_01 18:10

I went to a like a month ago, the center that I go to had like a little conference going over NF1, NF2, and you can kind of meet some other people that had it. Right. My surgeon was there, did a presentation, my neurologist was there doing presentations, so there was people to meet in that way. There's definitely, you know, social like online communities. My mom was involved with a bunch of Facebook groups.

SPEAKER_00 18:35

Yeah.

SPEAKER_01 18:36

Never got I never got involved in it. I mean, then I didn't really have all that just like you know, trying not to give it, trying not to go into it too much. I was kind of just trying to, you know. Yeah, of course. But there's definitely there's groups for for support out there, good.

SPEAKER_00 18:56

Yeah, because you know, everyone's different. Some people like to be able to talk about it and you know, talk about their day or talk about their resources or their you know needs, or even you know, lean on somebody for a bad day or something. So it's great to know that there are support groups out there, and there's those other people who maybe aren't so comfortable with groups and don't want to share and things like that. And we need to honor everyone on in their journey and where they're at. So I completely, completely appreciate that. So those of you who, you know, want more information about neurofibromatosis type two, NF2, you can go on and you know, good luck just spelling that out from what I just said.

SPEAKER_01 19:44

Yeah, it took a little bit for me to get it. I got it now, that's for sure.

SPEAKER_00 19:48

Yeah, so NF2 if you need to, and it sounds like NF1. It what what's the difference? Do you know that?

SPEAKER_01 19:56

Yeah, so NF1 is essentially the tumors are just like outside of your skin more instead of being like you get like you still get some kind of brain tumors, but they're like more in different areas. It causes different kinds of tumors. I'm not I'm not doing a great job of explaining it, but it's basically mostly mostly outer tumors, they don't cause yeah, in some ways it's not as bad, but I don't want to like make it sound like it's not bad because it has its own host of problems. You can get really big massive tumors that take up your whole back. I mean your whole back. Like, yeah, you can have serious issues with it, but it generally is like a lot of it's like almost just like you know, bumps on your skin, yeah, mostly mush muscle issues and that kind of stuff. Wow, it's not like eternal, but uh, they're both also I I didn't I didn't mention this before just to just to throw it out there. I I did get it from my father, but it is something that people get, like it's just you know, there's a rare chance obviously you can be born with it, like somebody somebody somewhere got it first, you know.

SPEAKER_00 21:06

Yeah, absolutely.

SPEAKER_01 21:07

There are people that are gonna get it that you know aren't gonna have the history. Like I, you know, I had some mental preparation and yeah, I got family members and stuff that definitely were were helpful in learning and everything, but some people aren't gonna know blessings in disguise, right?

SPEAKER_00 21:26

Kind of having that family history and having maybe a bit more support and understanding about what you might have to go through or might be going through. So it's fantastic. What can we as a community, how can we help support you know, you, your family, your community, and and the whole general sense? Like what can we do?

SPEAKER_01 21:54

Um, I mean personally, I just I just like the idea of just spreading the word, I'm happy to be on here. Talking about it. Good. Personally, I'm I'm doing fine. You know, I I just I just love to talk about it with you guys and just yeah.

SPEAKER_00 22:11

Well, and we're so thankful for it. Yeah. And that's that's where it starts. It's where it starts for a snowball effect of awareness, and then we can turn it to action, you know, after after awareness starts. So it all has a beginning, right? So we appreciate that so much from you. What do you see for yourself in the future as far as like advocating? What do you plan on doing?

SPEAKER_01 22:43

That's a loaded question.

SPEAKER_00 22:45

I mean, like just in general, like the whole doing podcasts, you want to write a book about it. Like, what are your hopes and desires here?

SPEAKER_01 22:54

I don't know. I mean, I would be open to do something like that. When I went to that that conference I mentioned, there's a guy who has NF2 also, and he's right around my age. I'm blanking on his name, but he makes music and he it kind of got me like kind of part of why I reached out and was like interested in in this whole thing is because it's it kind of inspired me a little bit. So I do I like the idea of doing that. Definitely not much of a writer or anything, but I don't know. If there's something I can do, I would like to do it. I don't really have anything like in mind, I guess, in particular.

SPEAKER_00 23:33

Or that's okay. I that maybe I'm giving you the idea, right? Plugging you with the idea. That's great. Oh my gosh. Well, thank you so much. I am so glad that you reached out and you and Karen, and I I just absolutely love Karen and what she stands for and all of her advocacy that she does, and they're just such an incredible family. So I'm really glad that you guys reached out and we were able to do this this discussion today. Neurofibromatosis type 2, NF2 is what we're talking about today. You can go look it up and see how you can support, maybe donate to research and be open to having discussions. If your family might be, you know, going through something and you need support, please look for some support groups or reach out if you need resources. I'm always happy to share them. So thank you so much, Will. It was so great to get to know you and have you on the show today.

SPEAKER_01 24:37

Thank you. I appreciate you having me. It was really nice talking to you.

SPEAKER_00 24:40

Yeah, it was nice talking to you too. And I I'd love to stay in touch. And, you know, if those ideas come to fruition and any of those things happen, I want to know about it so I can help support and promote it.

SPEAKER_01 24:52

I appreciate that definitely.

SPEAKER_00 24:55

Yeah, thank you. Well, I will be in touch and yeah, I look forward to learning more about you know, about this condition and seeing how I can help bring more awareness in in the community. So this podcast will be out in just a couple weeks, and you guys will all be able to hear about it and support then. So until then, have a great day, and we'll talk to you soon.