Welcome to the Smart Planning 101 podcast, Episode 28. I'm Nicole Wipp and I'm your host.
So today, we're going to talk about early diagnosis and help me with that conversation, I asked Jessica Armstrong from the association to have this conversation because early diagnosis in pulmonary hypertension is particularly important. Now, back in 2011, when Jessica was serving in Afghanistan when she suddenly became unable to breathe and she collapsed. Four months later, she was diagnosed with chronic four embolic pulmonary hypertension and told that unless you underwent a dramatic 10-houropen-heartsurgical procedure, she wouldn't live beyond the next five months. Today, Jessica serves as manager of the Pulmonary Hypertension Association's early diagnosis campaign and advocates for patients of pulmonary hypertension and other rare diseases. Thank you so much for joining me today, Jessica.
So glad to be here, Nicole. Thank you so much.
So you were serving our military and our military in Afghanistan and you became sick suddenly? Yeah, very. To say the least. To say the least. And so before we get into the subject matter, I think it's important for the audience to know a little bit about your experience, because from our conversations, what I know is that your experience we all have our own experiences and they're all unique. But in a lot of ways, they sort of overlap one another. So it's good to sort of talk about what happened. So tell us a little bit about what happened and how you came to your diagnosis.
Sure. So I was serving in Afghanistan and I guess about April time frame, I started noticing that I was having progressive shortness of breath, which seems strange because I was at that point in my life, extremely physically fit. I'd been a runner. I played rugby very competitively. I obviously had gotten fit for the for the deployment as well. And I was in tip-topshape and I suddenly found myself getting short of breath, walking just a few hundred feet, and it progressed and progressed. And so I eventually went and saw some medical care there on my installation in Afghanistan. And we thought it was air quality-relatedand they gave me some asthma medications to treat my symptoms. It continued to get worse and worse until I reached a point where I was actually on top of a mountain in a fairly dangerous place, and suddenly I wasn't able to breathe at all. And I had to actually remove my body armor, which put not just me with the others in my patrol unit at risk because I was essentially a sitting duck and they carried me down off the mountain. I lost consciousness. They took me back. But again, they weren't able to determine the source. And then in about in June, in mid-June, I came off of a patrol and we had just returned to base and I went back to my quarters and I collapsed. And I was unconscious on and off for about six hours. And when I finally came to, I was no longer able to stand. So I called for help. I actually had to drag myself along the ground to call for help on my stomach and they took me to the hospital. At that point, they found blood clots,and then it took another four months beyond that for them to recognize that the clots had actually, in my case, become chronic. And in October of 2011, I was diagnosed with chronic thromboembolic pulmonary hypertension. And at that point,I was diagnosed as a class for a functional class 4 patient and told that I had at maximum another five months to live. So the doctors recommended that I go home and get my affairs in order and spend the time I had left with my family. Fortunately, one of the doctors on my team decided to do some additional research because pulmonary hypertension was not something that she was very knowledgeable about. And she discovered that for patients with blood clot-relatedP.H., that there was a surgical procedure at that time. It was only being done in one place in the country. And she got me a referral to that center. And on January 20th, 2012, I underwent a pulmonary thrombosis endarterectomy, which saved my life. And it's the reason that I'm here today.
Wow, that's such an amazing story, and listening to it, I think I heard at least four points that you were clearly at major risk of losing your life at least. And I'm sure there were many more than that because I know that you haven't really you know, the story's always way more complicated than our basic story. Right. But, you know, I think just a lone hearing, you have five months to live. I mean, how old were you when that happened?
I was twenty-nine, so.
Twenty-nine years of age. You're in the military, you're kicking, but you're thinking that you're on top of the world, you're in shape, and then you're told you have five months to live. Now, this comes at you from nowhere. Right. Right. I can't even imagine while I can, actually, but everybody has their own story at twenty-nine. I'm older than you are. So how did you cope with that?
Not as well in hindsight as I wish I had. I'd love to say, oh, I did wonderfully well and I was one of those strong people who just said, I will persevere. I was scared out of my mind. I was really afraid. And I went through sad times and hard times and scared times and angry times and every emotion in between that you can imagine. And I was very, very fortunate because I have a very tight-knit, very supportive family. And I had a good network of friends that were behind me. And I was delivered into the care of the best medical experts in the country in this particular field. And so really, I had a lot of factors working for me. But even with that, it was difficult. It was quite a journey. And, you know, there were some dark days in there. There were some real dark days in there. But I'm happy now that I get to take all of that experience, the good, the bad,and the ugly, and use it to educate others about the disease and to work to raise awareness about this disease so that other folks don't have to experience what I do. And also that that feeling of isolation, that all rare disease patients, I think, feel that diagnosis, because most of the time when you get a diagnosis of something you've never heard of and it's very rare and the chances that you've met another patient are so slim, it makes you feel like you're alone in it. And I'm so grateful for, you know, for folks like you Nicole, who bring us together to be a community of rare disease patients and for opportunities to talk about that and to support one another in whatever way we can.
And that's really one of the many reasons why early diagnosis is so important, right, because one of the ways that we survive rare disease or any type of really devastating diagnosis, I would think I mean, I would think even if you had some type of cancer, that you may feel this exact same way that having a community and having support is one of the key players in getting better.
Absolutely. Absolutely. And, you know, that's been so important to me. I was fortunate to become connected with the Pulmonary Hypertension Association as a patient. And I can't describe to you in words what it felt the first time I met someone else who'd been through what I'd been through and who knew what I'd felt and who'd experienced exactly what I felt. It was so liberating. It was so encouraging. And it's so important that we have the support networks in place and particularly in a community like the PH community. Survivability of the disease without treatment is such a slim window. The average is less than three years. And so it's important for us to support one another, to connect another one another with resources. And the community that PH has built through support group meetings and online has been an invaluable resource for me. And now when I have a bad day, I know that I have, you know, thousands of people that I can rely on.
So that for pulmonary hypertension is one of the reasons why early diagnosis is so important as well, right? Because you just said a very startling fact, I would think that anybody that was listening to this, that without diagnosis and proper treatment, you're looking at a probably three-yearlifespan after the after the onset of the disease, correct?
That's correct. However, the studies show the average untreated is two point eight years. And what's startling about that to me is that there are actually 12 FDA-approvedtherapies for the treatment of pulmonary hypertension patients. And there's a lot of options. And I know other patients and talk regularly with folks who've been living with this disease for more than 30 years. So in the 80s, people said, well, this is a death sentence. It's not anymore. But if you don't get that correct diagnosis, if you don't get plugged into good resources and folks who are knowledgeable about managing these very specific, very challenging drugs, then your chances go down. And so having a community is important. Getting that early diagnosis is important and getting the best possible care is important.
But that's the struggle, isn't it? I think the struggle is getting the correct diagnosis. Wouldn't you agree?
So what should people be looking out for?
Well, with pulmonary hypertension, the symptoms are really nondescript, the sort of we'll say the mascot of our early diagnosis campaign is the zebra. And the reason we've tied ourselves to the zebra is there's an old analogy that's used in medical schools talking about if you hear hoofbeats assume it's a horse, not a zebra. And what they mean by that is common symptoms usually point to a common answer. But pulmonary hypertension patients and rare disease patients are not common answers. We are rare and exotic and we're not what you would expect. And so we are the zebra that you don't expect to see when you first hear those hoofbeats.
So the one thing that I do know about pulmonary hypertension is that a lot of the symptoms are very similar to the symptoms of my disease Lymphangioleiomyomatosis. So we're looking at what shortness of breath, General fatigue?
Exactly. So shortness of breath, difficulty on exertion, sort of. The hallmark that I hear is difficulty climbing stairs. That's the one symptom that over and over and over again, I seem to hear more from patients than anybody else. Fainting spells can happen as the disease progresses. You may notice a fluid weight gain and edema, which is swelling in your and your legs typically, and the shortness of breath sensation. You know, it's different. It's different from an asthma-likesensation where you have a tightness in your chest, for me, pulmonary hypertension felt like no matter how deeply I breathed, my lungs weren't pulling anything in. It was like the exercise of breathing was worthless for me. And that was because, you know, my lungs, the pulmonary artery that delivered the blood and oxygen to my heart was between my heart and lungs was blocked. And so that sensation almost feels like you're drowning. And so one thing that's really helpful within our community is to talk to our patients about, you know, if you've been on asthma treatment, if you've been on treatments for other respiratory diseases in the past or you are currently and those treatments aren't helping you, it's important that you let your doctor know you can take your inhaler around the clock. But if you're not an asthma patient, then it's not going to help. So that's one thing you can do if you get an asthma diagnosis and you don't think that's the right thing, you can talk to your doctor about whether or not you've had spirometry which would look at those things. You can have an echocardiogram which would indicate whether or not there was an enlargement of the right side of your heart, which is a sign that pulmonary hypertension exists in this progressing. And then, of course, the hallmark of diagnosis is the right heart catheterization, which actually directly measuresthe pressures inside the pulmonary artery. But before you get all of that, the first thing that we have to do as patients is really advocate for ourselves. And so what that means in practice is to remember that you are a consumer in the health care arena. So make sure that you're being treated by health care professionals that make you feel as if you're being heard and not as if you're being dismissed. Ask questions to clarify and persist until you feel satisfied that you got the answer that that's right for you, that you understand the answer, that you know what to do, what the next steps are, et cetera. You continue to push. If you don't think that you've gotten the right answer, it's completely reasonable for you to seek a second opinion. That's ultimately what saved my life. I went outside of the hospital system where I was being treated and got a second opinion and that's how I got a correct diagnosis. And if I hadn't done that, I wouldn't be here today. So we at PHA have actually created a resource that we call the patient self-advocacytool kit, and that resources are targeted specifically for any undiagnosed patient who's seeking answers. And it walks you through some of those things that I've just described, as well as a whole bevy of other insights. We've got pages where you can record your personal health information and all sorts of things to help you get through the diagnosis process. And but remember that it really lies with you. It really rests with you to continue to push that envelope, to continue to ask questions, to continue to be your own best advocate, because, at the end of the day, there's no one who knows how you feel better than you.
And I couldn't agree more. And I had a chance to look through that self-advocacytool kit. I recommend it so highly and we will have the links for people to be able to access that as well on our website because it is a great tool and is one that if you are not getting answers, I would also very much recommend you follow and go through because it's how you get yourself to a place of getting answers and that is not easy. For us, right, I mean, it's very difficult when you have a medical doctor telling you something then you don't necessarily agree with, but because you're not a medical doctor, you don't feel comfortable challenging them.
That's exactly right. That's exactly right. And it's you know, you just have to ask questions. I mean, if you went to get your car repaired and the mechanic told you something that didn't sound right, you'd ask more questions. You might even think about taking it to someone else. So for goodness sake, treat yourself just as well.
Well, certainly. But it's not that easy, right? I mean, I think that what I see a lot, and I believe you would agree with us, is that it's very difficult. A lot of times its one thing if let's say you were doing this on behalf of your own or your parents or definitely for your child, it's we can be really ferocious for the people that we love. But when it comes to ourselves, it's really difficult to advocate, isn't it?
Oh, absolutely. It's so true. It's so true. I was talking with another patient just yesterday and we were marveling about the ways that we adapted our lifestyles while we were at our sickest and before we were being correctly treated. I could describe this whole scenario for you, the way I used to shower and it involved, you know, crawling in and out of the bathroom on my hands and knees and showering on my knees because the steam would cause me to pass out. And I lived alone and I was willing to adapt my lifestyle that way rather than to go back to the doctor and say, I don't think this is right. And that's on me. But, you know, Nicole, you make a fantastic point. We are very good at caring for the people around us and for the people that we love. And if I had seen a loved one of mine living the way that I was living before my diagnosis, I would have clubbed them over the head if that's what it took to get them to the hospital to ask more questions. But I didn't do that for myself. And that's really the lesson here, is that we can dismiss our own symptoms. We can blame ourselves for our symptoms. I heard an interesting statistic recently. I was at a meeting of heart disease patients and one of the medical speakers shared that women are statistically more likely to wait until they lose five more pounds to see the doctor, no matter the severity of their symptoms.
But you know what, that's interesting.
It's not the five pounds. If you're having really severe medical symptoms, the five pounds can wait get yourself to the doctor and know that it's not your fault that you're sick.
But that's sort of interesting because you talk about the five pounds, so, you know, our weight is often blamed on things. And this is so funny because I was just at a doctor's office the other day because, you know, with a rare disease survivor, I feel like even though I'm quite healthy compared to many of the people that have my disease, I still have an endless round of doctors appointments. Right. That's one of the things that you get. And I'm at the doctor's. And he was we were talking about something that was going on with me and he made the comment. So just along with that five-poundthing, he made the comment to me, well, you're not that overweight, so. I guess I can't blame it on that, and I started laughing because I am well within healthy BMI, I'm in the mid to low end of a healthy BMI for somebody my age and my height and, you know, so that is not my issue. My weight is never my issue. But I also know that if I was somebody that did have an extra 10, 20 pounds on me, that that would have been the answer to that. It would have been my weight would have been the problem. Right. And very often weight does cause multitudes of problems. So, I mean, it's not like those two things don't have a tie. But that is sort of funny that that that's one of the things that everybody sort of looks too. And then one of the other things that you and I have discussed in the past that people always look to are mood disorders like anxiety and depression, right?
Oh, you're absolutely right. I mean, I've spoken a lot about asthma because. Eighty-fivepercent of our patients are misdiagnosed with asthma. But we did this study. It's been going on. It's still ongoing for about the year last year and a half. And in that time, we've collected responses from more than fourteen hundred newly diagnosed patients. And one of the things that we've been tracking is the misdiagnosis that they get along the way. And what was absolutely staggering for me was that a quarter twenty-fivepercent of our newly diagnosed patients report that they were told that they had some sort of mental health issue rather than a physical health issue. And so they were told that they had mania. They were told that they had depression. They were told that they had bipolar disorder.
Is mania a real is a mania a real diagnosis? No, it's
it's not a real medical diagnosis. They were told that they had anxiety. I mean, these poor women are I'm sorry, these poor patients, many of whom were in heart failure, were being told to go home and get a grip on their emotions.
And you said women for a reason, though, even though pulmonary hypertension affects people of all ages, both genders, and all ages and races. Right. You said women in this topic for a reason. And what was their reason?
Well, the reason is I've been talking with patients recently who've shared with me some examples of how they personally experienced this. And it just so happens that the patients that I've heard really the most staggering and startling stories from, happen to be our female patients. And, you know, that is in line with research that talks about the fact that women's reporting of their symptoms is often not taken seriously. But one patient shared that she was sent to group therapy. Another patient was told that when her symptoms started up, she was to pop a Xanax. Yet, I mean, it's just amazing for these conversations that I've had with a handful of women recently just bowled me over. And it's been interesting for me because I was put around the time of my diagnosis before I was successfully diagnosed. I was accused of malingering, of prolonging a simple blood clot, of probably being irritable because maybe my boyfriend had broken up with me or maybe it was menstruation-related. I mean, the things that I heard and I thought it was just me, but no, it really wasn't. And so that's something, you know, don't let someone convince you that it's all in your head. If you know that something's wrong, seek a second opinion, continue to ask questions. And then I want to touch back on the weight issue just briefly because it is so important. So the main reason that I came to work for the PHA is because of a family tragedy that occurred not quite two years after my surgery in November of 2013, my twenty-nine-year-oldcousin passed away in her sleep of undiagnosed chronic thromboembolic pulmonary hypertension. She had the same disease I did and I never knew and our parents never talked about it and we just never knew. And when Kristina went to the doctor, she had a lot of fluid accumulation because she was in heart failure. And the doctor said you need to lose 30, 40 pounds because you've put on all this weight recently. And he gave her some medication that actually accelerated her heart rate and thereby accelerated her death. And so instead of treating her weight as the problem, I wish that they had viewed it as a symptom because in her case, it might have made a difference and she might still be with us. So that's why I really advocate for continuing to ask questions. If it doesn't feel right to you, if it came on suddenly, please, please ask because it might save your life.
And that's one of the biggest problems I believe, in the rare disease community, is that regardless of the journey that you have to diagnosis and for some people like you, like you and even myself, even though it took me over a year to get a diagnosis that's sort of short, I think, in the rare disease space. The fact of the matter is, there's a lot of things that can disempower us along the way, right? Absolutely. And it's a very tough battle to fight when you are also sick.
And when you're being told, well, like in my case, I woke up being told, well, you just have anxiety. And I intellectually knew that that wasn't the problem. But I couldn't fight the fight for whatever reason. And it just discouraged me to go to the doctor and ultimately led to my having an emergency situation. But, you know, and this is my story, you your story, similar kind of thing, all these people, similar kind of thing. And so instead of like your cousin, maybe she didn't feel that she had enough power within herself to fight the fight about. I'm actually sick in this. You need to look more into this. And that led to her death.
Yeah, I think in her case, knowing her, I think that probably what happened to this, she was ashamed of the weight gain. It did come on very suddenly. She'd always been a very fit, active girl and she was young. And to suddenly have this 30-poundweight gain was traumatic for her. And so when the doctor brought it up, she was too ashamed to say, yeah, but this happened really suddenly. I'm not sure that there's not something causing it. You know, the kinds of things that might have led to a more nuanced discussion of that particular issue. And, you know, the thing about. Pointing to mental health reasons for physical symptoms is that the patient at some point can begin to believe it. They can begin to believe maybe it is in my head, maybe there is something wrong with me. Maybe I am unstable. Maybe I am imagining these symptoms. And what's hard is that that leads to a couple of things. A, because mental health is still such a stigmatized issue in our society, it often does advises patients from reporting their symptoms because they don't want to look. You know, now that someone believes that they are imagining things, they don't want to make it worse by saying, well, I've imagined some more and they don't want to add fuel to the fire by continuing that perception or adding to that perception. And so it can be very, very harmful and very, very detrimental to a patient's survival and. That's why it is so important for us to advocate for ourselves, but also to have a good network of family and friends around us that we can talk with and say, you know, this is what they're saying, but I don't think that's the case. I spoke with a woman recently who had shared that she was referred to group therapy and given all sorts of medications to control her anxiety and what they were calling bipolar disorder that was contributing to her perceived symptoms. And she said she was really having a hard time with it. And she happened to talk to a family member, a removed family member at a family event,and shared what she'd been through. And the family member works in the medical profession and said, you know what, with your history, you really ought to look into pulmonary hypertension because it could be that's what's causing it. And lo and behold, that was it. And it was the family member who said, I know that you were not bipolar. I know that you do not have anxiety issues. I know you. And I think it's something else. And here's the question you should ask.
That is a great point, and that leads me to I recently did an interview with Dr. Lisa Laken and she'sa women's health specialist. And one of the things that she suggested that people do, if you can't get answers, are you feel like you're not getting anywhere as to take someone that knows you well or a family member or a spouse with you to the appointment because they're going to be able to give context where you may not. They also are going to be able to advocate where you may not. And they're going to be able to say so like let's say like I multiple times told my medical doctor, my primary care physician, I don't think that this my problem is anxiety. I have anxiety. Certainly,I'm an attorney. I'm a mother. I have a law firm. But, you know, Duh, don't we all? But that I know the difference between major anxiety and what I'm experiencing. And I don't believe that's what it is. But he couldn't hear me. But let's say I would have taken my husband with me. And my husband said, no, this is not like she's not experiencing more anxiety than she did last year or the year before. If anything, it's less if he would have said that, the conversation probably would have gone differently, because now here's another person backing you up and really being able to give context where you may not be believable, especially I think this is really important. If you're you are you have a diagnosis of some mental illness or mental health condition and then you're starting to fight it, because then that, of course, what happens is it makes us look crazier, more, even though the issue is not that we're getting crazier, that they're making us crazy. It's like so maybe if you had somebody that could like like just like that lady of her family member would have come and said, no, this is not her. This is not her problem, even if that would have been it, that maybe that then becomes more believable and more of a directed conversation.
Absolutely. You're so right. You're so right. And it can be challenging with family because those who love us best, don't want to see us hurting. They don't want to see us ill. And oftentimes they'll go through a sort of denial of their own where they'll say, oh, gosh, you can't have this diagnosis, you can't have these symptoms, you can't be at the end of your life. And they'll refuse to accept it. And patients often feel unsupported when their family members are working through those emotions. And so it's important to sit down and have honest conversations to really communicate how you're feeling and what your needs are. And some of the resources in the patient's health advocacy tool kit are targeted to help patients do exactly that. But my first word of advice in this particular area would be not to give up and not to get frustrated and to realize that just as scary and as emotional as this is for you, the people that love you are also going through a scary emotional time. And we're not always good at compartmentalizing our feelings to support others because we're human.
Definitely. And I think that I've noticed that among the lamb community as well. There's a lot of frustration. There's a lot of support among family, but then there's also a lot of frustration with family and other loved ones. And part of that, of course, stems from both pulmonary hypertension and lamb. And there are a lot of rare diseases are actually invisible illnesses, right? Absolutely. So you go through the whole time, except for maybe at your sickest looked perfectly fine.
Mm-hmm. Yeah, nobody could tell that I was sick. I, in fact, you know, even I for at the beginning of my symptoms, especially chastised myself, oh, you need to go to the gym or you need to move more. You need to exercise more, which was outrageous. I was getting a crazy amount of exercise. I was deployed and going on drills every day. I mean, it made absolutely no sense whatsoever. But, you know, as easy as it was for me to think those things about myself, imagine someone else who wasn't in my body, wasn't feeling things that I was feeling how easy it was for them. And I looked fine. I looked normal. I, I could talk. I didn't I wasn't unable to cope with the day-to-day for the most part, other than the fact that I suddenly started sleeping an absurd amount of time. But, you know, that was it. And so yeah. Nicole, you've you really hit the nail on the head. Invisible illnesses make that particularly hard. And there's a. There's a growing dialog about that. Folks are talking about invisible illnesses more in the context of handicapped and disabled parking designations. I don't know if it's just that the media is paying more attention or if it's happening more. But I've been reading about patients of all sorts of invisible illnesses who are approached by what they call parking lot vigilantes. You have absolutely no business parking in the space. And we've actually had developed resources for our community, a little card that they can hand out and say, actually, I do have a reason to park in the space. I have pulmonary hypertension and maybe this moment can become a learning moment for you so that you learn about this rare disease that impacts so many people. But it's uncomfortable. It's very uncomfortable when it happens to you.
So these are such great tips about early diagnosis and awareness and really, I think the lesson I am taking from this conversation and I hope everybody else does, is that one of the biggest keys to diagnosis is self-advocacy. Would you agree?
Absolutely. Absolutely. And that's why we felt that the toolkit was such an important thing to develop. In fact, the chair and the founder of our campaign is Dr. Linnett Brown at Intermountain Healthcare in Utah. And she is she's the one who wrote on the findings of the review registry, which is the largest and most recent patient registry on pulmonary arterial hypertension. And this toolkit was her baby because she said, you know, I don't know how to get patients to my door if they don't talk to me if they don't ask questions if they don't advocate. And this is coming from a top expert in the field. So she's saying, gosh, I wish I knew how to get more patients to my door. Then you can rest assured that others in the field are having the same problem and that your primary care physician may have frustrations with not knowing how you really feel, not understanding. And so it's a two-sidedcoin. We have to communicate so that we can help them serve us better.
You're right exactly because, at the end of the day, we can blame our doctors all we want for not getting us answers, but very often part of that is are not articulating the situation well enough for them to be able to get us there. And so I think that that's so crucial because a lot of patients really do not understand that. They don't understand. They think you can just dump it on the doctor and expect some magic answer. But that is definitely not the way our medical system works.
No, not at all. Especially with the short time that most of us have and doctors appointments nowadays. I think the national average is under seven minutes, which is just appalling. But that's it. I mean, we and I'll give you a tip, actually, that I picked up from some of the medical professionals in the PHA community. So often patients go to the doctor and they think, I have to speak doctor. So they try to use medical terminology and to really communicate in the level that they think the doctor would talk about the disease or the symptoms in. And actually, a better approach is to keep it as simple and straightforward and as plain English as you possibly can, because that makes sure that there's not going to be any misunderstanding that you want in and certainly misuse a term or be misunderstood. Keep it basic. Keep it simple. Think about how you're feeling and describe it in whatever way you can.
That's a great tip, and I think it is important because we do I think people get intimidated and you feel like you've got to appear smarter than you might actually be. And at the end of the day, a doctor doesn't expect you to have a medical degree, nor do they want you to think that you do. And, you know, you just have to remember you're a person and that's why you're going to them. Right. And as for their knowledge and so. Right, I think that's great because it's definitely a common thing. Humans, you know, that's human behavior. We want to we don't like to look dumb,
No, and it's not looking dumb. It's just communicating clearly. So I find the best rule of thumb when you're trying to explain and I used to use this when I was a teacher. I tell my students, explain it to me like I'm a five-year-old. If you can do that, then you really understand it and I'll really understand it. And that's OK.
That's right. So tell us how people can learn more about pulmonary hypertension and how they can find out more about the PHA association, how they can contact you, whatever it is that you think that they need to know, how can they get more information?
Well, the first place I would send them is to the website, and that is phassociation.org, the early diagnosis campaign. You can find more information about that. And sometimes it's ph.org. I'm also on Twitter and my Twitter handle for the campaign is @jessapha. And the ph association is also on Twitter. We encourage you to connect with us and we do answer questions. You'll find us on Facebook, too. We want to make sure that wherever you want to meet us, we're there to open the door. But I'm happy to take questions. If you want to email me at Early Diagnosis at phassociation.org, you can also do that. I'm here to help. That's what we do.
That is so great, Jessica, and we are very appreciative of it because the whole beginning of this conversation was that one of the keys to successful diagnosis, recovery, getting through it is having a good community around you. Right. And that's what you're there for. And other associations associated with rare disease get yourself connected because it's going to make all the difference to the quality of your life later.
And all of these links will be in the show notes for this episode. So if you didn't get a chance to write those down, just visit the website and get on the show notes and you'll be able to access any information that Jessica just shared with us, as well as the patient guide because it is such a great resource. Thank you so much for joining us. Thank you. Nicole. Thank you for joining me on today's episode of The Smart Planning one on one podcast to read today's show notes to access the resources
discussed in this episode or to reach my guests, please visit smartplanning101.com/28 that's smartplanning101/28