Dariela and Matt,
Living with HAE
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hereditary angioedema (HAE) community
Hereditary angioedema (HAE) is rare, but you are not alone. Whether you live with HAE or you love someone with the condition, talking with other people who understand the challenges you face can be incredibly helpful. Connecting with people in the HAE community can help you discover new resources, build a support network and find encouragement when you need it.
Power of Conversation Webinar
Hear from Dr. John Anderson and Matt, a patient ambassador, about the importance of having open conversation in HAE management.
RENEE: Hi, thank you so much and hi everyone. As I was just introduced, I'm Renee Siegel, and I'm a patient marketer with Takeda and I'm really excited and happy to be your host for tonight's webinar. Takeda has been dedicated to advancing care in the hereditary angioedema space for more than a decade, and we're proud to be able to support the community in a holistic way.
RENEE: This webinar is part of that commitment. I'm really excited to introduce Doctor John Anderson, who is an HAE specialist currently in the faculty at the University of Alabama at Birmingham. He is also a Research Director for AllerVie clinical research, and I'm also excited to welcome one of our amazing patient ambassadors, Matt. Matt is brand new to our group, but he was diagnosed with HAE when he was just 16 years old. So, he has a ton of experience navigating and managing HAE that he's kindly agreed to share with us.
DR. ANDERSON: Thanks Renee. Glad to be here.
MATT: Thank you very much and thank everybody for coming.
RENEE: So, tonight's webinar, the topic is Managing an unpredictable disease: the power of conversation. Doctor Anderson and Matt will be discussing the power of conversation when it comes to managing and living with HAE, and we hope that everyone attending tonight will leave feeling inspired about the power of conversation as well. So, we can get our discussion started, and while we do, I first want to invite everyone here to participate in an interactive poll. So, all of our answers to these questions will be anonymous. We'll only show the results and I'm really excited to see what everyone knows about HAE.
RENEE: OK. So, the first question, so we'll ask three questions. The first question is what do you think the percent of people living with HAE reported experiencing anxiety? The options here are 20%, 50% or 80%. So, I'll give you a second to put your answers in. Alright, so the second question, what percent of people living with HAE reported difficulty with social activity? The options here are 14%, 30% or 54%. We'll give you another second. OK. And now our third question is what percent of patients reported that HAE symptoms prevented them from applying to certain types of jobs? First option, 21%, 42% or 69%. And again, I'll give you a second to insert these in. Alright, so the answers are just coming in from me.
RENEE: OK, so let's take a look at the results and we'll compare what your guesses were and how they lined up. So first, it looks like most people here thought that about 80% of people with HAE reported living with anxiety. The actual percentage is 50%, not as high as what you guessed, but definitely very high. It looks like most of us here thought that 54% of people reported trouble with social activity and the actual statistic is 34%. And finally, it looks like most of you thought about 69% of people reported that HAE symptoms prevented them from applying to certain types of jobs, which is right on point for the actual statistic of 69%. So, thank you so much for participating in the polls, and Doctor Anderson, I would like to ask you if any of these statistics surprise you at all.
DR. ANDERSON: Unfortunately, Renee, none of the statistics surprised me and this is because despite the treatment advances that we've had for people living with HAE in the US, they still do continue to be impacted by the disease. You know, I see it in my practice. I treat conditions related to both pediatric and adult allergy asthma, immunology, but especially HAE. And you know, this is one of my special areas of interest and I see people with HAE, even people with what might be considered mild or moderate symptoms, can still have their daily activities affected or be less productive than they might be like at work or at school.
DR. ANDERSON: And the higher frequency of attacks, obviously the more a person's quality of life is affected. And what I also know from speaking with my patients is that the unpredictability of the attacks can be overwhelming, and, in many cases, you know, unfortunately, there are instances that can be life altering. In many ways HAE can take an emotional toll that can be debilitating.
RENEE: Definitely. And Matt, I'm curious what your experience has been.
MATT: Yeah, there's definitely an emotional toll. There's a lot of worrying anxiety. I was 16 and in high school when I was diagnosed, and still many people doubted it or questioned my HAE, a lot of my symptoms were internal, so there's no way to really tell from the outside. I was questioning a good bit, and that made me angry and agitated. There was a lot of anxiety going back to school after time off, you know, they think nobody has that many stomach aches. And I had to work really hard to catch up on schoolwork that I missed. I was still a straight A student though.
MATT: It was the same with work. When there's nothing tangible to show, like a broken arm or something, people question things. I actually lost three jobs due to having swells and pain and not being able to do the work I was hired for. I thought I had to prove my worth when I took three or four days off in a row. I had to give them a good reason to keep me around. There's a lot of anxiety there. There can be worry about when the next attack will happen and wondering where the next one will hit. Like if it's my foot and it's not too serious, but if it's my throat, then you know it's life threatening and then I can die.
MATT: With my social life, I used to be the party type and there were times I'd end up laid out on the couch not having a good time and I'd bum everybody out a little bit. I was on a cruise one time. I had my girlfriend with me, and I ended up missing out on a party on the Lido deck with dancing and stuff. It stinks missing out on good times. Anytime there's any kind of plans, you never know, there's this constant worry. This intense level of being on alert didn't subside until I figured out how or figured out an effective management plan with my doctor.
RENEE: Thank you, Matt. I appreciate your answers and that's definitely something that we hear from others with HAE, this need to always be vigilant. So, I'm curious which area of your life would you say that HAE has had the heaviest impact for you? And actually, I'm interested in what everyone here has to share about this question as well. So, while everyone gets their answers, and we have a poll for this, Matt, why don't you go ahead and share your thoughts.
MATT: Well, for me it's been work. Like I said, I've always felt I had to go above and beyond at work to make up for taking off on some days. I felt I had to prove it was worth their while to keep me on, so that's no fun. One time I did have to leave, and I lost the job. My hands started going numb and slowing up on me. I was doing manual labor. I had to use a scraper on a three by two-foot tray and after about an hour or two my hands started swelling and I had to stop because if I couldn't use my hands I couldn't work. I came back a few days later and I did not have a job waiting for me. After that I didn't leave a job unless it was for the hospital.
MATT: I have a young son, so I was always afraid of not being able to provide for my family. I found ways to compensate, like if I had a hand swell, you know, I could adjust the weight of whatever I was carrying to one side. I had a job landscaping and I just worked through everything. I worked delivering furniture as well and same thing there. There were times I'd have to step away on the floor for a while, and yeah, that's no fun. I've also had to take time off to deal with, like, the aftermath of a swell and that can affect my confidence.
RENEE: Well thanks Matt. It sounds like the stories that you just shared, that it's really in your work life that's been the most impacted by HAE. And we have the pull up. I haven't seen the answers yet. So, it looks like, so it looks pretty similar. About 52% of you agreed that work, school life, and social life, but honestly it looks like it's across the board that it's impacted all of you. So Matt, I know things have changed for you over the years. Can you talk a little bit about that?
MATT: Yeah sure! Things definitely changed once I found the right management plan for me. Before that, I used to kind of hope to have an attack the week before some big event. In my mind this would lower my odds of having another attack and having my plans ruined, but we all know that's not exactly how HAE works. I would always be thinking about avoiding triggers. I was always weighing up the risk versus the reward of whatever I had to do or wanted to do. It's kind of an exhausting way to live. When I was finally diagnosed and treated, I was able to see the bigger picture then and even though I was having fewer attacks, it was interesting because I noticed that the HAE was still influencing my decisions and my lifestyle. I thought I could still do better, and I started to talk to my doctor more about goals and plans for the future.
RENEE: That makes a lot of sense. So, I'd love for you to share with us how having honest and open conversations has helped change or perhaps even alleviate some of the impact of HAE. Can you give us some details or examples about conversations with your healthcare providers or doctor, and also with your family and your friends because I assume that they help in different ways. Right?
MATT: Yes, you're absolutely right. Now conversation really is a very powerful tool, and each conversation helps in its own way, sometimes very obviously and sometimes in a more subtle way. First, talking about my day-to-day experiences with like friends and family normalizes things for me and the people in my life, and it chips away at some of the stigma. Everyone has something. We're all just people getting along with life after all, and HAE is a part of my life. There's nothing wrong with talking about it in conversation with friends and family. Second, relationship wise, you've got to have a talk with every serious, you know, girlfriend or boyfriend. They have to be able to help. They need to understand not to panic because it can look pretty scary from the outside. I always explain that there's going to be times when plans get canceled. You know, it's always a possibility.
MATT: Third, I've talked about HAE with employers and colleagues. Some people may not be comfortable with that yet. I found the confidence in myself to do so, and I find it has again helped reduce the stigma. And obviously, if I do get an attack at work, they can help me to an emergency room or whatever I need, rather than just staring and not knowing what's going on. And then finally, a few years ago, I was talking about my symptoms and how they were impacting me and so on with my current doctor. And I do talk a bit more about my personal life with him. We have an ongoing conversation and each time I check in with him I just kind of pick up where I left off so we can assess my management plan together.
RENEE: Alright, awesome, thank you! Doctor Anderson, do you want to chime in here? Do you see things similarly? How does open and honest conversations help manage an unpredictable disease like HAE?
DR. ANDERSON: Thanks, and yeah, I do see things similarly. You know the treatment landscape for HAE has undergone tremendous expansion over recent years with, you know, several new medications. And so, we're in a new territory, and treatment guidelines, they have increasingly emphasized improved health quality of life as an important aspect of disease management. So, what I need is for my patients to be able to freely discuss their experiences, like Matt has shared, well like what he's doing. When patients share honestly and fully with me on an ongoing basis, it makes for a more effective opportunity for me to serve them as a healthcare provider.
DR. ANDERSON: Of course, you know, I need to be able to make them feel comfortable enough to do that. For example, if I'm hearing signs of another condition, I can refer out to another physician or specialist, supplementing mental health or GI or whatever the need is. And again, the guidelines from the hereditary angioedema association, they recommend that patients and doctors develop what Matt had said is a comprehensive management plan, you know, and that's a care plan for HAE, which is individualized to each patient. It should include information about an on-demand treatment that's available for acute attacks, and for those who have considered it, the use of preventative treatments as well. So, these guidelines mention, you know, considering patient preferences in the context of attacks like their frequency or their severity, what other conditions they have, what is their access to other, you know, emergent help.
DR. ANDERSON: Patient preferences is a simple term, but it's perhaps deceptively simple. It's not enough to ask do you prefer a pill or a shot when it comes to medication selection. A physician needs to help understand the patient's lived experience and, you know, what disease related factors or issues are most important to them, you know. And this understanding is often achieved through, you know, conversation and not just through instruments or blood tests, but really hearing the patient's own stories and their own experiences. Many times, I'll ask my patients about their diets, and I'll listen, and when a patient is comfortable, they might share details that perk my ears up. Something like mentioning regaining the ability to eat a food that perhaps in the past was considered a trigger for their HAE attacks.
DR. ANDERSON: You know, honesty and ongoing conversations are really the only way to get to that deeper context that we can, you know, then use to help improve quality of life. For example, I can think of a patient when let's say they're carrying groceries and one patient might feel embarrassed to have others see their swelling in public, and another patient may not, you know, care about that all the way but they might find it, you know, difficult to contribute with household chores or other kind of family tasks and that can weigh on them.
DR. ANDERSON: And this kind of thing is what we mean when we say health related quality of life and part of this is what my, you know, my research interest has been in and we've designed some work to kind of uncover that, you know, the more that a patient’s, and the more that I know about a patient's feelings and their personal perspective, the better my, you know, my ability to help provide suggestions about adjustments to their management plan.
DR. ANDERSON: And, you know, that conversation can reveal things that the patient, you know, may not be thinking as related to HAE. One example of that could be sleep. You know, even if a patient isn't really having symptoms of HAE at bedtime, they might have anxiety about having an attack that still leads to a poor night's sleep and in patients, and I can, you know, maybe we don't always see this connection initially, but if we're having one of these broader conversations as Matt and his doctor do, it can come out.
DR. ANDERSON: Another example is with kids. I do have pediatric patients with HAE and I can think of a child who is scheduled to get braces on their teeth and, you know, parents didn't think to tell me, and that's OK, but great, thankfully there wasn't any kind of attack that occurred from the procedure, but that's certainly something that, you know, in hindsight, it would have been nice to know about in advance. And I can't emphasize enough just letting your doctor know what's going on.
RENEE: Great. I'm really interested about this topic HAE and children. I'm curious if the impact is much different.
DR. ANDERSON: Sure. So, in kids, about half of kids will show clinical symptoms of HAE during childhood and, you know, parents that are kind of clued into HAE might be kind of anxiously waiting and watching, you know, for an attack to happen. Since it's hereditary, anyone with a family history of HAE is invariably, you know, worried about their kids. And again, this is something that you can tell your doctor about, especially what's going on in your life or in the life of your children. One example that comes to mind is a child who has a sore throat, so infections are common, but infections can also be potential triggers for an attack of HAE. And so, the family might ask, you know, is this just a sore throat or is this the beginning of an attack?
DR. ANDERSON: And this can be a stressful you know life event for both the patient or for the family and, you know, letting me know about these circumstances can help us to direct the conversation towards a management plan for things like infections. We also mentioned dental care just a little bit ago. Most of my patients are able to have routine dental cleaning without triggering an attack. But I can think of at least one patient who did develop a throat swell after routine dental cleaning. As we all know, you know, throat swells can be life threatening, and for this individual we were able to review and discuss their management plan.
DR. ANDERSON: It's also important to talk to families about a child's lifestyle. For instance, many patients, you know, pediatric patients especially are participating in sports, and we want to make sure that the management plan, you know, accommodates these activities without unnecessarily limiting children simply because they have HAE. I can think of one of my patients who was advised not to go camping because he had HAE. A better plan would have been to include the activity, let them go camping, but making sure that there was a knowledgeable adult and rescue medication available.
DR. ANDERSON: You know, it's sad to see people, especially kids, miss out on sort of those childhood rights of passages, if you will, especially if it doesn't have to happen that way, you know. They don't necessarily need to avoid these activities if they have the right management plan. In the 2020 US HAEA Association guidelines, they recommend regularly reviewing the management plan and that can include consideration for long term preventative treatment, and that goes for both children and adults, and they also recommend education for families.
MATT: Well, when I was a kid, no one knew what was going on for the longest time. Before I was diagnosed, it was scary. I'd have these attacks, and no one knew what they were.
DR. ANDERSON: Yeah, you know, talk about like stomach aches and childhood, you know, Matt, when we think about that as a doctor about the differential diagnosis, that's that list of possible things that could be going on, you know, abdominal pain is common for kiddos and it could be one of many common things, but we also know that abdominal attacks are a common feature of HAE and so it can be difficult for a physician to really know how to how to read in on that, especially if patient and or doctor aren't really aware of thinking about the disease.
MATT: Right, yeah, and I would say if you were recently diagnosed then you're somewhat fortunate.
RENEE: Yeah. So, Matt, what do you talk about with your doctor these days?
MATT: Well, myself, I talk about triggers I’m avoiding, plans coming up, and ever since I've been more stable on this management plan, which is quite some time now, I talked about how I'm feeling emotionally, whether any particular aspect of day-to-day life could be better, and about goals for the future.
RENEE: Awesome. And is that what you'd recommend to everyone listening in tonight?
MATT: For sure, for sure, I would recommend that everyone tell their doctor about their symptoms, how severe, how often attacks come. But as Doctor Anderson said, it goes beyond just attacks. That's just the beginning. And that's just the most obvious. Hopefully your doctor will have you feeling comfortable so that you can talk about your emotions and how you're feeling, what's going on in your life, and what you want for yourself. Of course, people should also ask about treatment options. There is so much more available now. Like I said, if you were recently diagnosed, then you're pretty fortunate.
RENEE: Definitely. Thank you so much, Matt. OK. So, we're going to do another poll, if we could pull it up. We'd like to hear from our attendees one more time. We actually have another poll leader so. But after listening to what our guests have just shared so far about the power of conversation, I'm curious how you're feeling, if you're feeling motivated to reach out to your doctor to have a conversation. They'll give you a second to answer the question. OK, it looks like more than half of you are feeling more motivated, which is awesome. Definitely happy to see that.
RENEE: And now I would like to actually share something that I think will be really helpful for all of you. So, I'd love everyone to take just a minute to take a look at this new resource that Takeda has developed. We're calling it the HAE assessment tool. Someone with HAE, whether with or without their caregivers, can take a moment to fill this out and utilize it in aiding the conversation with their doctor or healthcare providers. I'm really excited about this resource because it's designed specifically for HAE, and it can help you make sure that you discuss the most important details with your doctor. Doctor Anderson, I know you've had a chance to see this tool and I'm curious what your impressions are.
DR. ANDERSON: You know, I think it could be a really useful tool. It's not burdensome and I'm sure that it can help patients have a more productive conversation by allowing us to explore perhaps some more important details or nuances. All too often, it's easy for the patient and doctor to fall into the trap of just talking about medications and attacks and not really spending time on triggers or lifestyle or goals or even values that the patient may have or need to share as part of that treatment plan. You know, having an exercise such as this tool can help prepare a patient in advance of the appointment, to help guide the conversation and steer it to, you know, topics that need to be addressed.
DR. ANDERSON: I'm sure most of us know all too well that HAE attacks can lead to hospitalizations if not managed and, you know, if a patient has been keeping accurate history of attacks and shares that information in conversation, it certainly helps me to establish, you know, some of the most important treatment plans with them, you know, to help feel confident that we can optimize their care as time goes on. But you know, I'm also confident that using a tool like this could be really helpful as well.
RENEE: Awesome, thank you. And how about you, Matt, can you tell us if you think this tool could be helpful and whether you’d use it yourself?
MATT: Yeah, I'd be glad to. I had a chance to explore it a bit and it says right there at the top and it did actually help me paint a picture. I was diagnosed 10 years ago, so I'm pretty well acquainted with how HAE affects me every day, but even so, I did learn a couple of things about myself when I sat down with the HAE assessment tool. For one thing, I realized that I've been using my on-demand treatment less and less often, and if we take a look at the second page on question 4, if I had had this a few years ago, I think I would have noticed that I'd actually been canceling plans more often than I thought. And yeah, I think that this would have been useful.
DR. ANDERSON: Renee, could I ask Matt a question?
RENEE: Yeah, of course.
DR. ANDERSON: So, let's look at question three, and I'm gonna use my old eyes here for a second, but it says, you know, one way to help your doctor understand how your HAE affects you is to talk about the impact it has on your daily activities. So which one of the following does HAE interfere with the most? And it talks about work, chores, travel, errands, school, exercise, sports, etc. And so, you know, my question for Matt is, have you ever thought about each of these daily activities separately?
MATT: Uh, that's a great question, and I actually had not. I just thought about my days kind of generally and talked about HAE that way.
DR. ANDERSON: Yeah, you know, that's what I found with my patients. And you know, it can be an interesting exercise to kind of parse things out in these different domains.
MATT: Exactly, yeah if I had had this a few years ago and given each activity some thought, I might have seen that I was turning down times with friends more than I realized. And yeah, and like on the last question here on question six, it says how satisfied are you with your current HAE management plan? So, my priorities for my life have changed over the years, and everyone's experience with HAE is different. It's unique to each person and the frequency and severity of the attacks can change over time for each of us too. So, talk about unpredictable. But this tool will be useful for everyone on an ongoing basis, and it's just easy to sit down, use it to kind of guide your thoughts and then share what you've come up with, with your doctor.
RENEE: Thanks for sharing all of that, Matt.
DR. ANDERSON: Yeah, yeah thanks Matt. You know, I'm glad to hear your thoughts about the tool, and you know, and my hope is that it will be useful and that, you know, others will be able to give it a try. One of the things that I mentioned earlier was about the guidelines that recommend that patients and doctors develop that comprehensive care plan that includes preferences around, you know, attack frequency, severity and other conditions, you know, and access to emergency care. They also recommend periodically reviewing the treatment plan and discussing that with patients, and I think a tool like this will help all of us do that. And it's easy to use, it just takes a short time to complete, and I think that the payoff could spark a deeper understanding about, you know, needs or preferences which leads to richer conversation.
RENEE: And everyone can absolutely access this tool, so we can just pause for a second on the screen. If you all have your phone, you can use the camera feature to pull up this QR code and the tool is available as a PDF to be able to save and print and use.
MATT: Yeah, I think this would have been useful if my mom had had this when I was a kid, for sure.
DR. ANDERSON: So, one of the things I think I want us to talk about too is how often, you know, patients check in with their doctors, like when would they use the tool.
RENEE: Yeah. And we can actually ask our attendees right now. It's an interesting question. So, this is the other poll, how often do all of you check in with your doctor about your HAE, and options here we have every six months, twelve months, or less frequently. You can take a second here. I'm going to pull up the responses. Interesting. OK, so it looks like about 50% of you every six months and 35% of you every 12 months and then about 15% less frequently. Thank you for filling that out. So, I'm curious, Doctor Anderson, why were you interested in that question?
DR. ANDERSON: You know generally, if things are pretty stable, I like to see my patients every six months or so, and I'm curious if patients feel or think about HAE the same way.
MATT: Well, for me it's once or twice a year plus blood work. If I did have an attack, then I would go right in because we need to talk about what might have triggered it and what might need to change?
DR. ANDERSON: Yeah, you know, I guess the bottom line really is, is anything changing, right? You know that's an important conversation starter right there. Lifestyle goals, family situation, you know, and we as doctors really appreciate it when patients, you know, and or you know parents of our pediatric patients, you know, come in prepared and are willing to share. And we talk about, you know, asking, try to ask comprehensive questions, but, you know, we don’t always know or how well a patient’s willing to open up.
DR. ANDERSON: And in my research, we talk about using qualitative methods and this simply means asking open-ended interview questions with patients and we can learn a lot that way. And so, one of the aspects of qualitative research, it's complementary to more traditional research, but it's its own unique form. As the name implies, it's designed to elicit a better or deeper understanding of patient’s lived experiences, and this understanding is achieved, not through formal instruments like questionnaires, but really letting the patients put it into their own words. And you know, and through a conversation we can learn what it really takes for a patient to get a greater sense of freedom or a sense of normalcy, increased productivity, or even improved interpersonal relationships. And you know, that's what I hope and want for my patients.
RENEE: That’s great. Well, thank you so much, and that brings us to the end of our discussion. In a minute. I'd love to hand it off to the HAEA so that we could take some questions from our audience here tonight. How does that sound? Matt and Doctor Anderson?
MATT: Absolutely. Let's do it.
DR. ANDERSON: Sure thing.
RENEE: Great. So, I wanted to take a second to thank Doctor Anderson and Matt for spending their evening with us and all of our attendees for your time as well.
DR. ANDERSON: Well, thank you. This was fun.
RENEE: Great. Before I hand it off to the HAEA, I just want to say we appreciate the HAE community a great deal and are here to support all of you and we hope that tonight's discussion has been useful and interesting for you. This has been Managing an unpredictable disease: the power of conversation for managing HAE. I think that we can all agree that having open and honest and ongoing conversations between people with HAE and their doctors is absolutely crucial to managing life with HAE. Takeda is happy to be a part of facilitating the session and discussing this topic, and as I mentioned earlier, the HAE assessment tool is available for download. We have the QR code up here one more time. We also have the QR code if you'd like to sign up for our newsletter to stay connected with us. So, I hope that all of you have a wonderful night.
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Get involved! Don't stay on the sidelines when it comes to managing your HAE. Talk to your doctor and find the right plan for you.
Dariela, Living with HAE
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When untreated, the swelling, or angioedema, in an HAE attack usually increases over a 24-hour period and then gradually subsides during the next 48-72 hours. An HAE attack can also start in one location and then spread to another before getting better.