Talking Rare Disease, But Make It Cute | Ashley Brooks
In this episode, Kerri Fitzgerald speaks with Ashley Brooks about her rare disease journey. Ashley first learned about generalized myasthenia gravis (gMG) during her studies in college and later learned she actually had the chronic autoimmune neuromuscular disorder. After getting diagnosed, she noticed an absence of people who looked like her—a young woman—featured in resources online linked to gMG, so she decided to start Ashley’s Anatomy as a way to shine a light on the condition and provide education and real-world insights on living with gMG.
Kerri Fitzgerald:
Ashley, welcome to My Hero 360.
Ashley Brooks:
Hi. Welcome. Thanks for having me.
Kerri Fitzgerald:
Thank you. We’re going to talk today about your journey with a rare chronic neuromuscular autoimmune condition called generalized myasthenia gravis, or gMG for short. You learned about the condition in one of your college classes, actually, before your symptoms began. Once you started experiencing these symptoms, it actually took a while for you to be diagnosed, and you even asked your doctor if it could be this condition, gMG. Can you tell me about how you started feeling the effects of gMG?
Ashley Brooks:
Yeah. I think if you ask a lot of people who have MG, if I go back in my mind, I’m like, “Okay. When did you start having symptoms?” I really was having symptoms before I even was like, “Hey, something is a little off.” It was subtle things. I remember, like you said, I was in college when I was diagnosed, I remember driving home sometime from a long day of classes, clinicals, and my vision was blurry, but traffic was always crazy, it’s busy, so I was just like, “Maybe I’m just seeing double because I’m sleepy or I didn’t get enough sleep or I had too many energy drinks.” But yeah, my vision was one of the first things I noticed, and also my talking.
I talk on the phone a lot with my mom, my sisters while I was at school. At the end of the calls, I’m just choking on my spit, was hard to talk. That was also another thing. Then I smile a lot. It started to get hard to smile. Then I was like, “Wait. I can’t form a smile. What’s going on?” Subtle things like that, I can just go back and think, but those were my first symptoms.
Kerri Fitzgerald:
What was it that was like, “All right. I have to go find out. What’s happening? What’s going on?”
Ashley Brooks:
This is going to sound so … But very on brand for me. It was the food. I was eating at a steakhouse with my mom. I think it was around my birthday. I was just eating the steak. I was like, “This is really tough,” so I sent it back. Once it got back again, I ate it. aI was like, “This is still really hard to chew. What is going on? Why can’t they get it?” Then my mom ate a piece of the steak and was like, “This is very easy to chew. What’s going on?” It was food. Then I started to notice from there. Okay. When you’re eating things like solid foods, it should be pretty simple to eat. I’m having to do a lot of effort to chew my food, swallowing. Like I said, I was choking on my spit. Sometimes just choking on water that I’m drinking from a tumbler. Definitely, it was related to me eating and drinking. I was like, “Let’s go to the doctor and figure out what’s going on.”
Kerri Fitzgerald:
Yeah. Absolutely. As I mentioned in my introduction, you struggled for a while to figure out what was going on. That’s a common theme that we hear from people who are navigating rare conditions. What was that like, going through that process to find a diagnosis? How did you feel when you finally understood what was going on?
Ashley Brooks:
I would say it was just very nerve-wracking, the whole experience, because you’re in your body, you kind of know when things are not right, when things are off kilter. I just could feel, in my deepest of hearts, something is wrong, something is not right. But I went into the doctor and told them what I thought this was. I was kind of brushed off like, “No.” Kind of being like a hypochondriac or something. “It could never be that. It’s so rare. How could that be something that you’re diagnosed with?” It was just a very nerve-wracking experience. I was just riddled with anxiety, waiting for phone calls from the doctor to tell me, “Hey, this is that,” or, “No, it’s not that.” Yeah, the whole process is just a lot on your mental.
Kerri Fitzgerald:
Sure. Yeah. Absolutely. For people who haven’t heard of this condition, because it is rare, how do you describe it? How does it impact you or other people on a day-to-day basis?
Ashley Brooks:
Right. Usually, I try to explain it as it’s a neuromuscular autoimmune disease. People are like, “Okay. What does that mean?” I always talk about phone service. Pretty much the connection between my brain sending messages, signals to the muscles, the nerves, the call is not going … It’s going out, but no one’s receiving it. When it gets to my nerves, my muscles and stuff, it’s not receiving that signal correctly because it’s interrupted with this condition. Once I explain it like that and put a visual of a connection not being made and that resulting in ultimately weakness in my muscles. Then I explain that voluntary muscles are pretty much everything that we talk, speak, chew, swallow, breathe, walk. You need your voluntary muscles for so many things. When I explain it like that, people are understanding. “You’re having weakness in your muscles when you are using them?” Yes. Talking, even doing interviews, I’m like, “You have to slow down,” so you’re not overexerting yourself.
Kerri Fitzgerald:
That’s a really incredible way of putting it. It definitely makes you be able to understand right away what that must be like. You’ve talked about how MG is an invisible illness. Do you find that it’s difficult for people to understand what you’re going through because of that?
Ashley Brooks:
Yes. That’s why I try to create content to put it in layman’s terms so people can … It’s easy to digest, so you can understand how it is. Put yourself in my shoes. This is how it is. I’ve just found that trying to explain it in layman’s terms, not using big terminology and stuff because it goes over people’s heads. I’m in healthcare, but I try not to talk about it in that light because stuff gets lost in translation, but yeah.
Kerri Fitzgerald:
To that end, you have developed this personal brand, Ashley’s Anatomy. You have a big online presence, a social media presence where you are using your voice to share your experience with MG and really educate people. What made you want to start doing this, sharing your story, being very vocal and public about it?
Ashley Brooks:
Yeah. Back in 2017, when I was diagnosed, of course, the first thing I did, I went on Google. Was like, “Let me see somebody else who has this. Let me see what I’m getting myself in for.” When I did the Google search, I only saw super medical articles, like the NIH studies, medical publications. I’m like, “No. I’m looking for a real person who’s living with this. How does that look?” I didn’t see anybody. When I did find some patients living with it, they didn’t look like me. They weren’t Black women or in their 20-somethings navigating through college. I wanted to create that space so if someone ever Googles myasthenia gravis, you’re a 20-something-year-old woman, whatever, you’re like, “How does this look?” You can see. There are people out here living with it and still navigating pretty normal lives. It was just to fill that space and be a resource and raise awareness because there was just no information about myasthenia gravis out there, really.
Kerri Fitzgerald:
Wow.
Ashley Brooks:
Yeah.
Kerri Fitzgerald:
When you first started looking, I know you said there was an absence of that presence. Were there any resources that you found to be helpful?
Ashley Brooks:
Yeah. Actually, some of the staple organizations, I believe, Myasthenia Gravis Foundation, they have been around. They offered a registry, I believe. Registries, you join to make it known, I guess, that you have this condition and contributing to the research of it all. We’re getting more information about MG. Other organizations, the National Organization for Rare Diseases, or NORD, they had some pretty good information about just overviewing the illness and offer resources for financial assistance for medications because back then, there was not many FDA-approved treatments, so they would offer resources to help you with that process as well. Yeah.
Kerri Fitzgerald:
That’s important. On the topic of treatment, has there been anything that’s helped you? Whether it’s an FDA-approved treatment or even just lifestyle modifications and changes, what has made a difference or an impact in the way you are able to manage this condition?
Ashley Brooks:
I think early on, I spoke with my care team and I told them my goal. Was like, “Okay. I know I’m diagnosed with this rare condition. I’m 22 years old, so let me let you know how I see myself living in the next five years.” I wasn’t thinking about just right then and there. We started thinking of how does life for Ashley look in the future, 5 years-plus out? I said, “I don’t want to be on certain medications,” which were steroids long-term because I was in healthcare and I saw what chronic steroid use and other medications, immunosuppressant drugs, would do to your system over time. It’s a known thing, but necessary to stabilize you, of course. I let them know how I wanted … I wanted to make sure. Wanted to be on minimum medications. I wanted my symptoms to be managed, so I wanted to attack or get my symptoms under control early on. That looked like me having a thymectomy, which is the open chest to remove your thymus.
I did elect to go ahead and move forward with that process after a few months of … I was diagnosed with MG officially maybe April of 2017. By December of 2017, I was having a thymectomy surgery because my symptoms were just so out of control, emergency room visits, emergency plasmapheresis. It was just so much. My doctors was like, “Well, it looks like if we … Studies are showing if you go ahead and have this procedure, that patients are having remission, better symptom management further out, maybe 3 or 4 years after your procedure,” but yeah. I thought it was a risk worth taking. I always say that I think taking that approach early on has definitely contributed to my quality of life now, but this didn’t happen overnight. This is years of really working with my care team to say, “This is how I want my life to look.”
Kerri Fitzgerald:
That’s really incredible that you had not just, “I want to … This is how I want to feel now,” but you had that forethought of, “This is how I want to feel in 5 years.” I think because you were diagnosed at such a young age, right, it’s critical that you had those really important conversations with your doctor and your care team. I think that’s really good advice for anyone who’s dealing with a rare or chronic health condition to really take that approach.
Ashley Brooks:
Yeah. Absolutely.
Kerri Fitzgerald:
I want to talk a little bit more about your social media and your content that you create specific to your MG journey. What responses have you received from people either who are dealing with the exact condition or maybe other people? What do they tell you?
Ashley Brooks:
The responses have been overwhelmingly positive. At first, I was a little apprehensive, of course. Anytime you’re putting yourself out there, being vulnerable, sharing your experiences, especially with something rare, like MG, you’re like, “What will be the reception?” But I get people who send me DMs or comments, and they’re like, “I live with this too. Yes.” Or, “Thank you for just making the content and the space.” Even the content that I make, I try to make it not so doom and gloom. Yeah. It’s a condition. It’s very serious, but there are positives in it, living and navigating life with a chronic illness. I just try to highlight that, the resilience of it all. It’s not so … I don’t want to say sad because sometimes it is sad, but not so serious, not so … You come to my page, you see vibrant pink, and we’re talking about MG, but we’re going to make it cute.
Kerri Fitzgerald:
Yeah. Absolutely. It’s a lot of really useful practical posts. I think you did one that was like, “I bought these items. They really helped me with completing X, Y, and Z daily task.” What would you say inspires your creative output for your page?
Ashley Brooks:
Honestly, sometimes I’m just doing random things out and about or in my house, and then I’m like, “You should definitely tell somebody this is what you had to do.” One day, I was talking to my friend. We were like … She has a different rare disease, stiff person syndrome. We were talking about the struggle of people with rare conditions … Who don’t have rare conditions, maybe not understanding the experience of having to crawl up the stairs after a hard day. It’s real, but sometimes it happens because you have to … If you’re weak and you’re having to crawl the stairs.
But yeah, just experiences like that that are unique to the experience of having a chronic condition, dynamic disability. Sometimes being able to do things, sometimes not being able to. When those things happen in my real life, I’m like, “Write that down because you can definitely go online and tell your MG family and just let the people know these are the things that I’ve had to do. This is what helps me,” because I want to share the information instead of … Some people don’t have to experience it. You can just put those out there for people to have them, access to them.
Kerri Fitzgerald:
Right. Yeah. That’s important. You mentioned your friend with another rare condition. While these conditions are rare, there’s so many rare conditions, right? Collectively, when you take that group of people who are living with rare conditions, it’s actually a much larger group of people. What do you wish people would understand or you want to make apparent about living with a rare condition?
Ashley Brooks:
I would definitely say I think in the media or if you’re just, I guess, looking for … If you don’t see it face-to-face, in person, a lot of people have a hard time coming to terms with invisible illnesses, rare diseases, and the impact the person who is experiencing them actually have because you can’t see it. I just always want people to understand with rare conditions, it’s so unique. It’s such a personalized experience for someone, but if they say that this is what is happening and they’re sharing their experiences, just take it at face value. It’s definitely what they’re living and having to live with day in and day out. I never am discounting anybody’s experience. I’m just always like, “It’s complex. It’s unique. It’s something you don’t see every day.” But I would say just respect it and just be open to listening when people are telling you about how their rare disease is impacting their lives.
Kerri Fitzgerald:
Yeah. Absolutely. Where can people connect with you, learn more about you, visit your site?
Ashley Brooks:
Yeah. My website would be the easiest way to … If you want to see what’s going on on Ashley’s Anatomy, it’s ashleysanatomy.com. Then from there, I make it pretty simple. You can click the links to all my socials, but everything is _ashleysanatomy, the handle. I try to keep it pretty consistent on the TikTok, the Instagram. Just more so on my Instagram, I do more of the patient advocacy and education. Then on my TikTok, it’s more loc, beauty reviews, makeup palette reviews, that kind of thing.
Kerri Fitzgerald:
Ashley, we like to conclude our My Hero 360 interviews by asking everyone the same question. Knowing what you know now, what would you tell your younger Ashley?
Ashley Brooks:
Probably just stick with it. Stick with it because there was a lot of times throughout my journey that I said, “No. I think I’m just going to just not … I’m not going to move forward. I’m going to drop out of respiratory therapy school because I was diagnosed with this rare condition. I’m going to just stop essentially pursuing the things that I wanted to do.” But I would just tell my younger self, “Stick with it. Keep going because it absolutely does get better.” Yeah. You just have to stick with it. Definitely that.
Kerri Fitzgerald:
That’s all. I love that. Well, Ashley, thank you so much for sharing with My Hero 360. You are already making such an impact through your personal brand. We’re really looking forward to being able to put a spotlight on gMG for My Hero 360 listeners. Thank you again.
Ashley Brooks:
Well, thank you so much for having me. Yeah, this was awesome.
Connect with Ashley:
https://ashleysanatomy.com/blog/
https://instagram.com/_ashleysanatomy
https://www.tiktok.com/@_ashleysanatomy
https://www.youtube.com/channel/UCXrzesB_OXb68gftMqms7iQ
https://www.facebook.com/AshleysAnatomy/
About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world.
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