Patient advocate Tad Rockwell and caregiver advocate Danita LaShelle discuss HAE prodromes, teen symptom awareness, and the importance of recovery after flares.
Transcript
Danita: Hi everyone! My name is Danita LaShelle and I am a caregiver for an incredible teenager that lives with hereditary angioedema.
Tad: Hi, I’m Tad Rockwell and I am a patient with hereditary angioedema. I was diagnosed in the early ’90s and then got on some modern treatments here in the early 2010s and made a huge difference in my life.
Danita: Wow. So I have a couple of questions for you, Tad, because I’m on the, you know, I’m a caregiver and I’m on the dealing with my daughter, who we lovingly nicknamed Ladybug, but she’s in this teenage portion of her life where we’re still navigating her telling us when she is not feeling well, or maybe when she’s, like, experiencing some symptoms but doesn’t necessarily want to stop her life.
Was that something that you dealt with as a teenager before you were diagnosed, or even when you were after you were diagnosed, or you just kind of didn’t want to stop life before you, you got any help?
Tad: Right, like, that’s a huge, huge deal with with people with HAE I think.
So my first attack happened when I was 5 years old, and I had to kind of retroactively figure that out.
Danita: Oh, wow.
Tad: I didn’t get diagnosed until I was 24, so there’s a 19-year lag there that included the years you’re talking about as a teenager. But as a teenager, I used to have a ton of attacks and they were misdiagnosed as something else. So my journey might be a little bit different than your teenager’s. However, it’s it’s really relevant because in my 20s and 30s, when I was diagnosed and there was no treatment, right, I had a level of denial around my disease.
And and it’s kind of a natural evolution when you have a rare disease and there’s no treatments and there’s nothing to be done except go to the hospital, it’s like, “OK, it’s not that bad. I need to continue my life.” I have work, I have my kids, you know, insert sports for teens or wanting to be normal as a teen. It’s the same thing.
And so it was very interesting. My wife, my caregiver, she actually developed the ability to help me understand when I was having an attack before the attack actually manifested.
Danita: Wow. Right. Yeah, yeah.
Tad: So she would understand when my brain would go into brain fog, for example. That was a huge prodromal symptom for me. So prodromal symptoms are very interesting. Like everybody with HAE has different ones. Some of them have like a tingling sensation in their face. Some people have brain fog, things like that. And if you’re in a place of denial, like you just don’t want to have a rare disease like a teenager does, then it’s very easy just to ignore it. And then once the attack really manifests itself, you’re kind of behind the eight-ball, right?
So as you know, Danita probably —
Danita: Yeah, for sure.
Tad: HAE is a freight train leaving the station. Right. You got to catch it early. Otherwise you can’t catch it at all.
Danita: So it’s funny that you were talking about the tingling in the face, because that’s my daughter. That’s one of her prodromes. She doesn’t have brain fog. She gets very fatigued. But the tingling was something that I realized that as soon as that happens, if we get her dosed right when it’s happening, then we’re great.
But she didn’t know how to articulate that, especially when she, she was diagnosed around when she was about 9 years old. But I can think back to when she was having symptoms much earlier, and she would tell me all the time, “my, my, my fingers falling asleep” or “my hands are falling asleep” and I just thought, “you’re laying on them, stop laying on your hands,” you know?
But as she got older and we would tell her those there’s a tingling, there’s a tingling. And she was not equating that to the, that being a prodrome. And so finally, when I, when I made a reference to the fact that if your hands feel like they’re falling asleep or your your face feels like it’s falling asleep, let me know. And it was at that point she was just like, oh, that’s what the symptom is.
Tad: I think that, like, my overall story can relate to your daughter because I was at a time when, yeah, I got diagnosed with HAE type 1, but there really wasn’t a treatment. There was so much things we didn’t understand and that can create a lot of anxiety, especially with, I think, a teenager who just wants to be normal.
Danita: Yeah, eah.
Tad: And it can make it harder. But I think I think also just kind of going back to the prodrome thing, I think over time she’ll probably develop the ability to identify her own prodromes. Right. But until then the the weight kind of falls on the caregiver. Right.
Like my wife, I can’t tell you how many times she’s like, “Tad, you’re off. You’re off, Tad. Like your brain is not tracking.”
And I would get upset and I would be like, “No, my brain’s fine.”
And then later on I’d be like, “Oh my gosh, my brain is not tracking. Oh my goodness, I need to treat myself, like, right now. Like immediately.”
Danita: Yeah, right.
Tad: And I mean, fortunately, there’s a lot of stuff that’s built for type 1. You know, I’m on a prophylactic treatment and I also have a rescue medicine. So as long as I have, I mean, I have an identifiable protocol, but I, I can’t imagine what it’s like for your daughter where with type 3, you’re trying to figure out, like, what works, what is helpful.
Danita: Yes. That is that is a thing that we’re dealing with. We’ve, we’ve kind of, we’ve found a sweet spot, if I can call it that, where she’s really only like, literally, as of this recording this week, we are coming out of a flare, but we didn’t have to go to the hospital because I was able to catch it and combat it with the emergency medication. And of course she has her preventative care as well.
And with my daughter, I think the thing that is more of an issue with us sometimes is that we’re always trying to keep her from being the superwoman the moment that she feels better. We’ve noticed that once everything kind of subsides, there’s still, like, this 24-hour window that we need to let her rest so that she doesn’t trigger another flare. It’s almost like her body is still trying to come down.
Tad: Yeah.
Yeah, to do that with a 16-year-old, it’d be like, “Hey, I know you feel great right now and all of your friends are at the mall. I, I still need like an additional 24 hours for you to kind of settle so that you can have a, you know, a great week.”
And, and so that can sometimes be very difficult for us to, you know, because teenagers, it’s like — it’s a right now thing. Right?
Tad: It’s right, it’s right. I feel great. It’s great. It’s over. It’ll never happen again.
Danita: Right, exactly.
Tad: I used to have that mentality. One of the rules I used that was helpful for me is, you know, however, along the buildup for the attack was in the attack, there was like an apex, whether it was treated or not. So if it was like a 24-hour buildup, I had to give myself a 24-hour build down. So it was a it was a it was a two-day buildup. Right? Until it was resolved, then I needed a two-day down and I just had to chill.
Unfortunately, I tried not to do that like a hundred times and I paid a steep price until it kind of, you know, sunk into my thick head that you got to just chill and take it easy.
Maybe your daughter, nobody wants to see anybody go through that. But like, maybe it’s like, oh, maybe, you know, they need to get knocked on their butt a couple of times and respect the disease.
Like, I think that one of the things that I didn’t have was a healthy respect for my rare disease. I wanted to diminish it. I wanted it to go away. And if I pretended it wasn’t there, it wouldn’t hurt me. And I was wrong, I was wrong.
