E46: Three Young Women Battle ALS and Stereotypes

Mary: I'm Mary Parker and welcome to this episode of Eureka's Sounds of Science. Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease is a progressive neurodegenerative disease. In simple terms, it denies muscles nourishment leading to atrophy. The average life expectancy for a patient diagnosed with ALS is two to five years. The women I'm speaking with today, all of whom were diagnosed with ALS before their 35th birthday, are working to bring awareness to and legislative support for people with ALS through their group, Her ALS Story. They want people to know that contrary to popular conception, ALS is not just a disease of older men. Welcome Kate, Leah and Gwen. Hi guys.

Leah: Hey, Mary.

Mary: Thank you all so much for being here. Just as a reminder to listeners, February is rare disease month and February 28th, I believe is rare disease day. So can you each introduce yourselves to get us started? Kate, you want to go first?

Kate: Sure. My name is Kate Nycz, I'm currently 36 years old. I was diagnosed just before my 33rd birthday, so I am approaching four years with this disease and I worked as a nurse practitioner for 10 years and just recently retired and hoped to spend my time raising awareness and enjoying every day that I have remaining.

Mary: That's wonderful. I mean, I think we've all learned the importance of nurses in the last couple of years, for sure.

Kate: Yep, the pandemic has certainly brought greater appreciation for our field.

Mary: Yeah, definitely. Leah, how about you?

Leah: Hi. Yeah, so I am Leah Stavenhagen. I'm currently 29 and I believe my ALS symptoms began about four years ago, but it was only three years ago that I learned what ALS was and that I likely have it. At that time I was living in Paris and working as a management consultant. Today, all that has changed. About a year ago, I got married. I'm spending a lot more time in New York now to be closer to family and also treatment options and instead of working ... So, my working has switched and I spend a lot of my energy on ALS advocacy. About a year ago, so in April of 2021, I began Her ALS Story with these wonderful women.

Mary: Excellent. I've never been to Paris, is it as amazing as it looks in pictures?

Leah: I love it. Yeah, it is great. But do you know, there is a weird ... I forget exactly what they called. There's some type of syndrome because are some people, especially I think Asian tourists, who arrive and they're so surprised that it's dirty and not quite as beautiful as people think and so they go into a shock. So it's great, but not picture perfect all the time.

Mary: Yeah, fair enough, Gwen. How about you?

Gwen: That's so funny, Leah, because when I went to Paris, the one and only time, Parisians we met were asking me, "Do you like it here? What do you think about our city?" And they were complaining, "It's dirty, right?" I was living in San Francisco at the time, which in certain areas can be pretty dirty, so yeah, pitfalls of big city life.

Leah: Exactly.

Gwen: Hi, I'm Gwen Peterson. Like Kate, I am 36 years old, proud member of Her ALS Story. I was diagnosed with ALS in May of 2018 and then turned 32 just a month later, June, 2018. So, that is a birthday I wish I could forget, but yeah, that one's ingrained in the memory. Like so many of us, it took me forever for the official diagnosis to come in, which has unfortunately such a domino effect around us getting on FDA-approved ... the drugs for ALS, there's only two and getting to trials. We can chat more about our stories in just a bit but yeah, thank you.

Mary: That actually is a good segue to some questions I was going to get into later. But do you guys think that your age or gender had some effect on how quickly you were able to get diagnosed?

Leah: Sure. So, I think in some ways I got lucky. As soon as I was in front of neurologists, they very quickly assumed that I did have ALS, but for about a good year before that I was having leg cramps and maybe not quite as strong as I should have been and a neurological issue, which is not at all on the table. In some ways I feel like that was lucky because with so few options for ALS patients, I got this year of ignorance actually, where I wasn't worried about having a very serious illness, but by the same token, yeah, it was just doctors didn't think that that could be an issue that I might have. Then later on, I was in front of one neurologist w

ho said, "Oh, you're a young female, no way you have ALS," which unfortunately just isn't the case.

Mary: So, where were you at the time in your life when you were diagnosed? Why don't we start with Kate again?

Kate: Yeah. I was running half marathons and playing co-ed intermural soccer. I was living in Boston, working outside the city and I had met the man of my dreams on a work trip in Las Vegas. He came to visit and I was having trouble zipping up my jacket. I thought that was odd. Life was coming together for everything I'd ever dreamt of and slowly, I was having more trouble running. I felt like I was in slow motion. I was getting winded when I was walking and talking with people and then at work I was having trouble unscrewing things. So, my first symptom really was right-handed weakness and also slurred speech. So, I went from a fun party girl to, "Oh shoot, this is actually a sign of a bigger issue." People questioning, "Are you okay to drive?" Which normally would have been like, "Ha, ha, okay, I'll grab an Uber." And then one evening I'm like, "No, I only had a glass of wine, huh." So, being a nurse, my diagnosis pathway was a lot different than others. I ordered an MRI for myself. I was thinking MS not ALS. So, to get the news that, nope, you've got one that has no cure and a very short span to live was a pretty harsh blow for a 32 year old, who was planning a wedding and moving along in her career and looking to buy a home and now had to shift completely to a new direction.

Mary: And how has your ALS progressed?

Kate: I am a fairly slow progressor. I'm four years in, I'm just starting to use a walking stick and a rolling walker. I'm still able to eat and drink on my own and take care of my bathing and toileting on my own. So, it's slower and weaker, but I feel pretty lucky to maintain the strength that I still have.

Mary: Leah, how about you? Where were you in your life when you were diagnosed?

Leah: So, at the time I was 26, I was just finishing up a master's in Paris and focused on business management, and so getting ready to start a career in management consulting. I was living with my boyfriend. Yeah, things were really coming together. Growing up for years and as a student, you're stressed about finding the right job and being in the right spot, finding somebody that you maybe want to spend your life with, and so all those things are really just falling into place. Then all of a sudden, yeah, like Kate said, this huge scary thing comes and just drops all of that. You realize that the fancy job, that doesn't matter anymore because your days are probably numbered. So, it was a big blow for a long ... or not for too long, but for a little while, I was able to continue on my plans. Stayed in Paris, but then about a year later, I decided that it made sense to start spending more time in the US because the health systems are so different and as far as clinical trials and research in general, the options are a lot better in the US. So, I've spent a lot of time in New York because I follow an expanded access program at Columbia University. It's also good to be a bit closer to family, so I split my time between Paris and New York.

Mary: How has your ALS progressed and have you been involved in any clinical trials yet?

Leah: So, my ALS progressed pretty quickly. I felt like it progressed more quickly when I realized something was wrong. It began in my legs and my feet and within a year I needed to use a wheelchair. Pretty soon after that, I lost a lot of control, or strength in my arms and my hands. Also, so about a year as well later, my diaphragm became weak. So, I'd need to use a breathing machine at night. After I started the EAP, I felt like the progression did slow down. So today, it's just continuing on, but so it was like a year when it all pretty quickly and then it's been plateaued since then.

I've never been part of a clinical trial. The one that I thought I'd be in took a very long time to set up. So instead, it was an expanded access program, which I'm very lucky that that was a possibility because as many ALS patients know, clinical trials are very tricky.

 

Mary: And finally, Gwen, how about you?

Gwen: I love this podcast because-

Mary: Well, thank you.

Gwen:... I knew we were all very similar, especially where we were in our lives, but truly the three of us were thriving in all of the same areas in our love lives, professionally, traveling, seeing the world, exploring. That's exactly where I was, which is ironic Mary, that when early symptoms started manifesting, I was told by my primary care doctor, "Oh, wow. You've got a lot going on. You've got too much going on." And that's when I was misdiagnosed with anxiety.

So, I rode that misdiagnosis for a year and a half before the official diagnosis came in. On the bright side, in that year and a half, I got married to my best friend, went on a beautiful honeymoon, was doing really well at work. So, so much good happened in that time and then shortly after diagnosis, I was admitted into a clinical trial, phase three, with a really promising therapy. Being in that trial gave me hope.

Mary: How has your ALS progressed, Gwen?

Gwen: Yeah, same as the other women. I am extremely fortunate to be a slow progressor. Another common thread between all of us, we have ALS, but ALS doesn't have us. We recognize that and because we're relatively slow progressors, we're relishing in the opportunity to continue to travel and to raise our voices for advocacy and so much more. So, that is such a central point of Her ALS Story.

Mary: Well, that brings us right to our next question, almost like you're a professional podcaster who can segue between topics perfectly.

Kate: Yeah. Go, Gwen.

Mary: How did Her ALS Story get together? How did it all start? Leah, let's start with you.

Leah: So about a year ago, I had stopped working and found myself with a bit of extra time and thought (weird noise) I really want to get involved in ALS advocacy. Still, since the very beginning, it's hard because you look out and I didn't know of anybody with ALS that looked like me. You see Lou Gehrig, you see maybe Steve Gleason, Steven Hawking. So these are all males. Some of them are young-ish, but still it's hard to not say ... There's nobody else that has this disease that I see, that has to deal with having a period or wanting to get pregnant maybe one day. So, I really had a yearning to find another young women. So with the help of Lori Andre, and I AM ALS, we started a campaign to gather stories of young women with ALS and that worked out pretty well and transformed into Her ALS Story, which I founded in April of 2021.

Mary: And Gwen and Kate, when did you guys come in and join Leah?

Kate: Oh, geez. I would say shortly after that, maybe June, I received an email asking, would you be interested in participating? That invite has come in many different way, shapes, forms, Young Faces of ALS, I AM ALS mentorship. Like Leah said, there are all these places that maybe capture a small part of our experience, but I too was missing that sisterhood in a shitty ass disease.

Mary: And how about you Gwen?

Gwen: Yeah, so I met Leah last year. She is an absolute sweetheart. She had a vision that I loved and I asked Leah, "Are you sure you want me in this group? I'm turning 36. Have I aged out?"

Leah: No way.

Gwen: And Leah said, "Of course not. It's group of women's diagnosed before our 35th birthday, so you fit squarely." Also, to Leah and Kate's point, other members of the group feel really comfortable in this space. I was speaking with one last night who said, "I didn't know that there was anyone like me out there," meaning a young woman's diagnosed and going through all the same things we're going through. So, it's a really safe and hopeful space to have relatable conversations, a space I've found like no other.

Mary: Well, that brings me to my next question. I was wondering how your treatments have gone, not just physical and the medications, but what kind of emotional support have you guys gotten?

Kate: Oddly enough, I've been with my therapist four and a half years. So, I engaged with her before my now husband was moving in, just some general anxieties and we were just about to part ways when I received the official diagnosis and she was completely out of her depths of knowing how to treat ALS as a therapist. But what we have found in the past four years, is it's a lot of the same anxiety or grief over the loss of the future you thought you had. She has been the best processing support. My friendships have been the best. I need help tying my shoes or I can't carry my bags into the house or random things that all of a sudden change. So, the day-to-day support is friends, my husband's been huge, but I haven't really, other than Her ALS Story, I haven't found a group that connects with me and can really understand and empathize where I'm at in any given moment.

Mary: Yeah, that makes sense. How about you Gwen?

Gwen: Yeah, so it was my psychiatrist who urge me to have a second opinion in after that anxiety misdiagnosis. She was the one who said, "You don't lose your balance and fall from anxiety. So I went to a university level medical center of excellence and that's when I started getting answers and she was amazing. Unfortunately, she left the practice. I found a grief counselor living in San Francisco and to see someone in the city was going to cost me $250 an hour, that was not feasible. So, that was a few years ago. I haven't seen anyone since.

Mary: Can I just say, and I don't know if I'll leave this in or not, but when you say you were misdiagnosed with anxiety, that just makes me so viscerally angry on your behalf because it sounds so much like the old timey, "Oh, she's just hysterical."

Leah: It's horrible and a lot of people have stories similar to that.

Gwen: Exactly. Can you say that again, Leah?

Leah: No, I was just saying that there's so many women who have very similar stories to Gwen. It's so horrible to hear.

Gwen: Yeah, it's not uncommon.

Leah: At the same time, like Kate said, it's really important to find people that do fully understand what you're going through. So, that's what's super cool with Her ALS Story because unless you have to deal with ALS every day, you can never really understand how difficult certain aspects can be.

Mary: Yeah. Do you ever meet as part of Her ALS Story together?

Leah: We have Zoom meetings, but in person it depends the people all over the country, even a few people in different countries. So, we've never had a huge get together, but few of us have met in person, yeah.

Kate: We did attend the fundraiser for Project ALS in New York City. And there were, what, four of us that were able to attend? I know my husband in particular found that super beneficial to meet the other husbands and connect with the males who are supporting the badass women. So, I think that brief interaction in person had a huge impact on us.

Gwen: Yeah, just a quick plug for Project ALS and the incredible work they're doing around drug discovery and supporting women in general.

Mary: Yeah, it was started by a woman, I believe?

Kate: Yes.

Mary: A Broadway producer, isn't she? Yeah.

Gwen: Yes.

Leah: They're awesome. Yeah, we love them.

Mary: So, we mentioned this earlier, but just to circle back to it, have there been any times where you have felt that you have been overlooked or misdiagnosed or dismissed because of your age or gender? Not just from ALS, but from any malady that you might have had?

Gwen: Just a few things I've heard that I wish I could un-hear are, "Oh, you poor thing." Or, "You poor girl." Or the best one is, "But you're too young to have ALS." And that's exactly why Leah's started Her ALS Story. We're trying to change that narrative. If the three of us can get ALS, anyone can, and it's not just Lou Gehrig's disease. It's not an old white guy's disease, anyone can get it.

Mary: Yeah, absolutely. I think this is a problem historically, definitely in science in general, is that we have set this default as white men are the base standard for human bodies and everything else is just like a variation on that. But that's not a good way to look at it, obviously.

Leah: Exactly.

Mary: Because things get overlooked.

Kate: That pregnancy question, Leah, came up at Mass General and they looked at me like I 10 heads.

Leah: Which is crazy.

Kate: Right, I cannot be the first person asking this question, can I get pregnant? What would it do to my body? And all of them looked at me and shrugged.

Leah: Well, that's just crazy because you see a lot of young couples where maybe it's the male that has ALS and pretty soon after diagnosis, there's a baby. And for them nobody looking at them like crazy, but for some of us, yeah, they wouldn't approve.

Gwen: On that note while I was in a trial, I almost wish they gave me regular pregnancy tests because they kept reinforcing, "You can't pregnant. Are you guys using contraception? And you can't be pregnant." It's still raw, I don't know when it's not going to be raw, but at the time it was just ... It was too so much.

Leah: I have to pee in a cup every time I go to the hospital. I guess that way you don't have to talk about it but ...

Kate: Mine's blood work, but Gwen, at least they still thought you were having sex. I have a coordinator who was like, "Are you and your husband still sexually active?" I'm like, "We are in our 30s, yes."

Gwen: I know.

Kate: My goodness, I'm not old and shriveled up.

Gwen: Yeah, so moral of the story is please don't put ALS in a box. It's not going to get us anywhere. Yeah.

Mary: So, speaking of the future, what kinds of plans have you all made for the immediate future? Leah, you want to start?

Leah: Immediate future, continuing to do cool badass things with these women. But on top of that, lots of traveling, my husband and I have maybe seven weddings to attend this summer, which is crazy, so that.

Gwen: No.

Leah: But what is very difficult, what we've all already mentioned, is it's very much focused on today is the short-term future. It's hard to think about long-term things. It can be sad, it can be difficult. So lots of fun things in the coming months, but we'll have to see later if we're back again.

Mary: Oh, so many weddings, so many weddings.

Leah: Yeah, it is crazy.

Mary: How about you Gwen?

Gwen: Yeah, so ALS just uprooted my husband and I from city living to suburban life, which is just fine. I get to be within 20 minutes from my nieces and nephew and they're all under eight years old. They are all so funny and keep me laughing and keep me cool too. So, I love being around family and I'm so much closer, location-wise now.

Mary: And how about you, Kate?

Kate: I appreciate Leah's comment. You're handed a diagnosis where they tell you you have two to five years to live, compared to interviewing for my first job where they ask you, "Where do you see yourself in five or 10 years," and my crass and sarcastic, "Alive." So, before retirement, I had plenty of money and no time. So, now I'm trying to figure out having all the time, but not as much money and less independence, but my husband and I are going to Napa Valley for his birthday in February and then, yeah-

Leah: I have some recommendations for you.

Kate: Oh great, yes.

Gwen: You ladies are inspiring me to get something on the books.

Kate: Do it.

Gwen: Mary, you should do.

Mary: Oh, we have something very special on the books coming up. We're getting a new puppy soon.

Leah: Oh my gosh, I'm excited.

Gwen: Nice. Oh, we also, we also got a new puppy after I got ALS. Kate has a dog, Leah has a cat.

Mary: Pets are the best.

Kate: Furry friends are so good. Yeah, my puppy is turning two years old in February and-

Mary: What kind of dog is it?

Kate: He is a Bernese mountain dog.

Mary: Oh my God, they're so cute.

Kate: So, a big fluffy, 125 pound-

Leah: Oh my gosh.

Kate: ... thinks he is a lap dog. Yeah, he is awesome.

Mary: So what, besides fluffy dogs, brings you comfort?

Kate: Oh man.

Gwen: Food. I'm still able to eat on my own, feed myself. I've put on weight since the diagnosis, so have not slowed down-

Mary: Excellent.

Gwen: ... in the food department, yes. So my husband's a great cook, haven't been out a ton in times of COVID but a good meal makes me happy.

Mary: Gwen, you are absolutely right.

Leah: Yeah, I would also second that.

Mary: So, what are you each most proud of?

Leah: So first off, I would definitely say finding these other great women in Her ALS Story, because it's so important to do things and find things to connect people. I think a few years ago, I would've said becoming fluent in French and creating a life for myself there, which was great. That still is great, but that's so personal, and I think something that I learned very quickly after having the diagnosis like ALS and in general, is that what's most important is doing things for and with others. So yeah, creating this great group of people.

Mary: Yeah, that's a really cool thing that you've done, Leah. How about you, Gwen?

Gwen: Being a small part of something that's way bigger than me, whether it is advocacy, or contributing to research, or trying to be a good person, wife, auntie, whatever it is. Just doing my best, giving my all, even if it's a small contribution to something larger.

Mary: Yes, definitely. And how about you Kate?

Kate: Oh man, I think I'm most proud of feeling like I've been able to overcome the sense of pity that people try and put on you.

Leah: Oh I hate-

Kate: Right? That face, that, "Oh, poor you." To be able to take that and get people to turn it around when I interact with them, is probably one of the greatest accomplishments I've had in four years. Joining different groups, joining the fight, supporting other people. I've often been asked to meet with people when they are newly diagnosed. I think that speaks to the positivity and the attitude that I'm surrounded by at Her ALS Story, that each of us comes in ready to fight, not roll over and accept a really short, shitty life, but to really strive to make a difference and enjoy and appreciate every moment we are given.

Gwen: That was a rock star answer.

Kate: Thanks guys.

Mary: So let's end with the classic question. What do each of you want to tell other women who are facing a similar diagnosis?

Leah: I can go first. No, go go ahead, Kate.

Kate: No, no. Go on, get it.

Leah: Okay, so what I have to say is a little bit silly maybe, but related to what Gwen just said, actually for me, I lost a ton of weight and I didn't realize, I think as a young woman, society has always told us that, "Oh, you're losing weight, that's good." So, even when I had doctors in front of me saying, "Don't lose weight, add sour cream to everything you eat, eat cake if you need to." It's so contradictory to what you've always been told, that it was hard for me to think that, "Oh, the fact that my legs are skinnier," that's a bad thing. And so to come early on with ALS, to really try to keep your weight up and just stay as positive as you can, and find a strong support network for other people that are going through a similar thing, I think that's so important. That's something that really can help your disease to progress more slowly and then improve your quality of life.

Mary: Yes, thank you, Leah. How about you Gwen?

Gwen: Yeah, so as women, I think we know our bodies pretty damn well, so listen to your body and whether it's in ALS or another disease, or even in life itself, sometimes you have to know the right questions to ask in order to get answers. So with that, keep asking questions, keep pushing, research, find people in your network who can help you. Just main thing, you know your body, listen to it.

Mary: That's great advice for literally everybody, I think.

Leah: Exactly.

Mary: And how about you, Kate?

Kate: I want to reiterate both of your comments are so important. The image of femininity and being a skinny, beautiful woman for me that also incorporated being a strong woman, was what I thought would make me a valuable human. So, confronting all of the body image has been extremely challenging as woman. But what I would want people to know, I would not wish this diagnosis on anyone, but when faced with anything that is this devastating, surround yourself with the strongest people you can find. The women of Her ALS Story absolutely represent that for me and I couldn't imagine trying to get through this fight without some.

Mary: Yeah, and I know that you all know this better than most people, but just to reiterate for the listeners at home, there's all different kinds of strength.

Kate: Oh yeah, and having to separate that out into, okay, I may not have physical strength, I can have emotional and mental, and just still be the strong person I want to, just looks a little different. Leah: Oh yeah. You're probably so much stronger today than you were when you were 18 and, I don't know, lifting heavy rocks or something.

Mary: Hope so anyway, dang.

Leah: For the majority.

Mary: Well, thank you all three of you for joining me and for the listeners, check out Project ALS, but you can also find out more about these women and others at heralsstory.org. That's H-E-R A-L-S S-T-O-R-Y.org. So thank you guys. Thank you, Kate, Leah and Gwen.

Gwen: Thank you, Mary.

Leah: Thank you so much Mary.

Kate: Thank you.