Episode 265 - Jennifer Garigen

In this episode, Dr. Morris Salem, a pediatric cardiologist, discusses his involvement with Camp del Corazon, a camp for children with congenital heart disease. Dr. Salem emphasizes the importance of addressing the emotional well-being of these patients, in addition to their physical health. He believes that the camp helps boost their self-confidence and allows them to have normal experiences. Dr. Salem also mentions the positive impact the camp has on parents, some of whom become involved in planning and fundraising for the organization.

Dr. Salem is also a 2024 Gala del Sol Honoree. This gala is a major fundraiser for the camp taking place Saturday, April 13, 2024. Click Here for Tickets. Click Here to take part in the virtual auction. 

#galadelsol #campdelcorazon #heartcamp #camplove #supportagoodcause 

Hi, my name is Dr. Morris Salem. I am a board certified pediatric cardiologist and I have an additional board certification in adult congenital heart disease. I work at Kaiser Permanente in Southern California and I am happy to say that I'm one of the honorees at the Gala del Sol, that's going to be occurring on April 13th, 2024.

I've been involved with this camp, Camp del Corazon, for over 20 years. I was very close friends with the founders of this camp, Lisa Knight, and I continue to be very close friends with Kevin Shannon, MD. Over the last 20 some odd years, I've been referring lots of patients to this camp. It's truly been an incredible experience when these patients come back and tell me about the best time that they've had in their entire lives and that they want to go back.

I have on my desk right in front of me a prescription pad that says, "This is a prescription from me to you to go to camp." I find kids that are 7, 8, 10, 12, teenagers who are shy, who are in a space in their lives where they're not confident at all. They don't have a whole lot of friends and they're not feeling confident about themselves. In the 15, 20, 30 minutes that they're in the office with me, it's pretty obvious. I've known a lot of these patients their entire lives from when there were fetuses all the way up to however old they are, and you can tell. You can tell that they're just not confident. They are very gun shy and perhaps very self-conscious about who they are and what they're able to do and what their role is in life. Every time I see one of these patients, I run to my office, grab a prescription and hand it over to them. I tell them that they have to do this. This is a requirement. This is medication. A fair number of them actually take me up on it and sign up for camp.

A lot of these kids are really sheltered by their parents just because of everything they've been through. The parents are just as hesitant as the kids are in terms of letting their little babies go off and do whatever they need to do. Now, obviously they're not babies, they're older kids, but they treat them like they're a piece of ceramic. They're very, very sheltered. It is quite difficult to get both the parents and the kids to agree to go to this, but a lot of times there's a lot of tears shed on both the parents' part and the kids' parts before they leave. But once they get there, it is a transformative experience. It is one that completely changes their outlook on life. They don't want to come back.

I had one patient, recently, who fit this scenario precisely. Parents didn't want him to go. He didn't want to go. I forced him to go. He went and due to some weather circumstances, they actually got trapped there for an extra day or two and he did not want to come back. Absolutely did not want to come back. I saw him shortly after his trip and he was just glowing, bubbling. He's going to be a frequent flyer. He's going to keep going back until somebody tells him he cannot go back anymore.

It's always very difficult when you get patients who have done nothing wrong. This is not of any fault of themselves. This is something that's just happened to them and unfortunately they have to learn to deal with it, and our job is not just to help them deal with it from a physical standpoint, but also from an emotional standpoint. The physical standpoint, we can take care of. We have medications, we have procedures, we have all sorts of different things that we can do. We can tell you with the ultrasound what the heart function looks like. We can give it numbers, but the emotional aspect is something that's a lot more challenging for us to deal with.

Learning how to treat these patients as not just as patients, but as human beings who think like any other child does. They need to experience things that other kids who don't have these limitations and don't have to think about, can I do this? Can I not do this? Should I do it? Should I not do it? That's really what keeps us going and keeps us motivated to keep pushing and treating these patients and helping them to have normal experiences. That's what the point of all of this is, not just the body, but the mind and the soul.

I think camp and self-confidence and your ability to see your self-worth as who you truly are and not as a diagnosis really helps open up a lot of opportunities for you. These kids come back and they want to do things. They want to go out and run a little bit faster in PE. They want to join that team. Maybe they're not the fastest, maybe they're not the strongest. It doesn't matter. They just want to be involved. That in and of itself really helps to propel them and open up more and more and more doors and really make them productive members of our society, which is very important.

It's very interesting, I think a lot of our parents are also incredibly positively impacted by this camp experience that their children have. One of my parents of a child who actually attended camp has actually become very, very invested and very, very involved in the camp in terms of planning and in terms of fundraising, in terms of all aspects of this camp. It is a sense of belonging. It's a sense of making a difference and taking this experience that you had nothing to do with provoking or bringing onto yourself, but turning it into a positive aspect and turning it into something that you can share with other people who are going through the same experience.

Being at Kaiser, we take care of roughly 5 million members in the Southern California region. As you can imagine, that's a huge, huge number of patients that we deal with. I've been at Kaiser close to 25 years, and I've seen and taken care of thousands upon thousands of patients. Part of what I do is really coordinate and take care of all sorts of patients with congenital heart disease and all sorts of associated conditions from San Diego all the way up to Bakersfield.

I'm well known and affiliated with all the major institutions in town, including UCLA, Children's Hospital of LA, Loma Linda, everybody in Southern California. It's through my affiliation with all these institutions and my referral to the camp, many, many patients over the last 20 years, that the camp committee took notice and said, "Wait a second. Maybe this guy who does a lot of work and refers a lot of patients should be someone we recognize."

I really want to encourage everybody to look into this amazing organization, Camp del Corazon. They are a purely volunteer led organization with one goal and one goal only in mind, and that is to take care of these children and their families with congenital heart disease. They do this out of love. They do this out of commitment. They do this out of a sense of purpose. This Gala that's set for April 13th, 2024 is their major fundraiser. It is where they collect a majority of the funds that they're going to be utilizing over the summertime for this camp that is held in Catalina.

This camp is really intended for patients who are special, patients with congenital heart disease, other affiliated conditions like pulmonary hypertension, anything that involves the heart and the lungs as a chronic issue. These are the types of kids that attend this camp in a very safe and very closely monitored fashion so nothing can happen to them. If it does, there are people there who can take care of them and make sure that they're safe. It is free of costs. All expenses are completely paid for, mainly from fundraisers such as this. There is a virtual camp for families that cannot make it to California to make it to this camp.

There is both a silent auction and a live auction that will be offered at Gala del Sol on April 13th. That is well, well worth everyone to sign in and look at if you can't physically make it to this Gala.

My name is Dr. Morris Salem and I'm aware that my patients are rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

In this episode, Dr. Morris Salem, a pediatric cardiologist, discusses his involvement with Camp del Corazon, a camp for children with congenital heart disease. Dr. Salem emphasizes the importance of addressing the emotional well-being of these patients, in addition to their physical health. He believes that the camp helps boost their self-confidence and allows them to have normal experiences. Dr. Salem also mentions the positive impact the camp has on parents, some of whom become involved in planning and fundraising for the organization.

Dr. Salem is also a 2024 Gala del Sol Honoree. This gala is a major fundraiser for the camp taking place Saturday, April 13, 2024. Click Here for Tickets. Click Here to take part in the virtual auction.

#galadelsol #campdelcorazon #heartcamp #camplove #supportagoodcause 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the rarity of their experiences.

Hello, my name is Brittany Valim. I am 34 years old, and I was diagnosed with pulmonary hypertension in 2010. In 2009, I decided to go on a big hike, they're called the Punch Bowls in Santa Paula, California. I noticed walking up to the trail, which is a really steep hill, I started getting out of breath. I thought it was just because I just had a baby two years ago and I'm overweight. We kept going on this trail. The more and more I kept going, the more and more I started losing breath. I was holding onto tree branches to climb up these hills. Finally, when I got down from the hike, five hours later, I decided that I was going to relax and just figured my body was just not ready for that. I decided that I was going to go to the doctors.

I was wrongly diagnosed for a year with high blood pressure. I was rushed to the ER after many other ER visits and I was told I had pulmonary hypertension. They sent me home to go see another doctor who disagreed with the emergency room doctors. A month later, I was rushed to the ER again, and that's when I was kept in ICU and was told that my heart was so bad that I could have possibly died.

When I was in the ICU, they were trying many different IV medications. I remember them trying one of them. I remember getting so sick that we could not do it. I think I was in the ICU for about two to three weeks. My hardest thing was not, “Oh my goodness, this disease I have,” it was more, “My son is at home, and I cannot see him,” because the swine flu was pretty big at that time, so no visitors could really come in.

There were people passing away all around me, so that was freaking me out and giving me anxiety. Then, at the end of my stay, we finally figured that Letairis and sildenafil would be my treatment from then on out. I have idiopathic pulmonary hypertension. They have no idea how I got it. I believe that it was from my son. I can't quote that, no doctor has said that's what it's from. But when I look at pictures from after me being pregnant until I was sick, my neck was pretty swollen and so was my face. I just took that as maybe my heart had a lot of fluid around it, and no one really saw it before then.

I was 21 years old, and I wanted to do what every other 21-year-old wanted to do, and that was going dancing and hanging out with friends. So, those first years, actually, for a long time, I struggled with having this diagnosis because I was in my 20s, and I just wanted to hide everything under the rug, so I acted like everything was fine. I went out and probably did way too much more on my body than I should have, but I was still taking medication.

In 2018, I got sent to the ICU again. We used to tell my son that it's just, "Mom needs a tune-up. Mom needs a tune-up." I was put in there, and my doctor and my nurse at Santa Barbara Cottage Hospital sat me down and told me, "Hey, look, we need to try something new." They came up with the IV meds, the sub-q and Tyvaso at the time. I was in my late twenties now, and I said, "Oh, I want Tyvaso." I was going to beauty school, so I didn't want a pump. The thought of having something attached to me all the time just was not for me. I did good on Tyvaso, but I hated taking it. After I started Tyvaso, I was able to go to the gym. I was able to kayak with my family at that time, but I was just not compliant with taking it. It was just too bulky. I had to put it in a bag and everybody always stared at me when I was taking it. I was over it.

I decided to tell my doctor that I did not want to do it anymore, and I was no longer compliant with it. He suggested that I do sub-q or IV. I had a serious talk with my nurse, at that time, at Santa Barbara who is amazing, she's my saving grace. She told me that sub-q would be really hard, and that's when I decided I want the intravenous line. From then on out I was taking it and it was making me very sick for a long time.

I finally realized that, hey, I need to change my life and what I'm doing. When I got sent home on oxygen that same time, the pump isn't what scared me so much, it was the oxygen that got me shook. That's what caused me to say, this is the real deal now, this could be your life forever being on oxygen and that's when I decided to change my partying habits, my cooking habits, my exercising habits. I was ready to change. IV meds, did save my life for a while.

For about five or six years, I was on IV meds, and in 2018 when I moved to San Jose, California from where I had been before, I started noticing that I was just not breathing well. I couldn't work as much. I was getting sick more often. We started talking about the transplant list. So in February, in 2020 is when I officially got put on the transplant list. I had to have my mom come in and help me live, because there's times I couldn't even get out of bed I was so weak. I needed help with my son. Just house cleaning, I have two dogs. But it still didn't hit that, “Oh my goodness, I'm one day going to be on a table and I'm going to get lungs and a heart.” It didn't really hit me yet.

When I was first diagnosed with PH, I was really alone. I didn't know that there was these groups online. Every time I went to a support group, they were all older than me. Everybody was older. I just didn't feel connected to anybody, so I felt like very alone. My mom, we were fighting a lot, because she would tell me things that I shouldn't be doing. I was telling her, I'm a grown woman, I know what's right for me. I know when to take a break. It was just really hard at first and towards the end, that's when I finally felt support from my friends, family. Then, I started becoming closer to people on Facebook. Then I started reaching out to people on Instagram. Then, I backed away for a little bit because I was starting to face the realities. I was going through so many things. I thought I was having a heart attack at times when it was just anxiety.

I had a lot of support, especially from family. I had family and friends were more supportive than I've ever thought. I had so many cheerleaders of people who I had been friends with for years on Facebook and Instagram. They were just cheering me on every day. That's when I started showing my stages of this is me today, this is how I feel.

One weekend, I was with my family, it was my best friend who is my cousin, it was her baby shower. That following Monday I got a call saying, "Brittany, we noticed some of your symptoms and some of your testing, we would like you to come into the hospital. We just want to check you out." I said, "Okay." I went in. They did more testing. They let me go home. I got a call on a Wednesday and they said, "Hey, I want you to enjoy your weekend with your family, but on Monday, I think it's time to put you on ECMO if we don't get a call before then."

That following Friday morning, I got woken up by my boyfriend and he's telling me, "Brittany, they're calling you. They're calling you." I said, "Why are you lying to me? Why are you lying to me? Why would you even say something like that?" He said, "No, I'm serious." Because for some reason I turned my ringer off. My mom came running in my room and she's like, "No, Brittany, you need to call them back." I called them back and then that was the reality of me getting a heart and lung transplant. This was at five o'clock in the morning is when I called them back. They told me that I needed to be at the hospital by eight o'clock.

Well, when I got the call, I sat there in awe for a second, because my son was still sleeping, and that was the hardest thing for me to do was leave my son. I wanted to wake him up. Well, I tried to, I don't know if anybody's ever tried to wake up a 13-year-old. They refuse to wake up. I tried and he was just kind of like, "Okay, okay, bye." Of course, being a mom and my son is my rock, that was really hard. I decided I wanted to take a shower, because I wanted to be clean. That's when we started packing my bags. But my mom said if there is anything else I needed that she would definitely pack a bag for me.

To get to the hospital, it was about 40 minutes. Since it was during COVID, only one person can take me up to the room. My mom chose my boyfriend to do that. I was sad about that, but I was really happy, because me and my mom were very close and I know she was stressing out. So if we had been together, I feel like I would've gone into the OR with all of this anxiety, because I knew that my mom was hurting. I wasn't even thinking of me. I was just thinking about how sad my mom, but happy she was and so scared was. I couldn't even think about how scared I was.

When they were ready for me, they allowed my boyfriend to wheel me down in a wheelchair to the OR. I remember talking to all the nurses. My stomach was just in my throat. They were asking me what type of music I wanted. I told them I don't even care what kind of music there was. I remember joking with the nurse, sitting on the table staring at this white ceiling with the big hood light. I remember telling her, "Has anybody ever told you no, nevermind. I need to go." She was like, "No, nobody has." I said, "Well, I might just be your first one to want to leave the OR." We kind of laughed about it and she gave me encouraging words. As soon as that phone rang, I heard one of the nurses in the OR say, "Okay, it's time to go." They told me to count backwards, and I don't even think I remember counting.

It was a 12 hour surgery. I got out. I think it was three hours out of the surgery I started bleeding into my lungs and they had to take me back to the OR. They told my mom that it is pretty common for that to happen. After that, everything was pretty well except for waking up and realizing you cannot see. That was the hard part. I had TED's disease, so I woke up with very, very blurred vision. I couldn't see who my nurses were. I couldn't see who my doctors were. I couldn't see where my mom was. I couldn't see anything. My eyes were just so blurry I could not see. In the end, we think that it happened to be with so much trauma on your body that it caused me to have retinal detachment in both eyes.

Within these three years, because my transplant was in 2020. My right eye is pretty good. I still can't see very well through my left eye. I think that's just damaged for good. My life has been forever changed. I did have a bump in the road, of course, diabetes. Diabetes comes with the territory of transplant, but mine has stayed with me. I got put in the hospital, I believe it was six months after transplant. I was just not feeling good. I was throwing up and I finally called my team because my mom, of course, made me, and my boyfriend was like, "Yeah, you do need to call the doctors." I did. I went into the ER and my blood sugar was at 650, my glucose.

After that, I started realizing, okay, I definitely need to eat a lot better, which I was pretty much doing anyways because you're on so many restrictions out of transplant. You have slow emptying of your stomach. You have all of this stuff, so you can't eat fiber. Your potassium might be too high. So you're trying to figure all this out. I remember being on a high dose of steroids. I actually yelled at my mom, in one of the grocery stores, because I didn't know what to eat anymore. I just told her I wanted a starve and not eat anymore. But diabetes was my only bump in the road.

I consider myself very lucky. I am the mom that I've wanted to be. I wish I can go back and be this mom back then with PH, but it was obviously hard. I am going to school now. I am a full-time nanny and I take ballet. I've been a dancer for a very long time. I did it in high school. I just always loved to dance, and I finally took myself to the JC here, and I decided to do ballet for fun.

If I could give advice to someone in their twenties or just anybody in general or to my 21-year-old self, I would say ask for help. Find other people who are like you, or people going through the same thing as you, because they really do know what you're going through, emotionally, physically, they do. I know everybody's tolerance level for pain and emotions are always different, but you need someone to talk to. It's really hard to do this alone. I tried it and it wasn't the greatest.

With a PH diagnosis, I didn't really live day-to-day. I didn't think of myself as passing away. I never thought about that, because I don't know if it has to do with me being a mom or not, but I just could not fathom not being here. I would fight to stay here just for my son. After having the diagnosis, I still have a great outlook on life. I ride the wave, definitely ride the wave.

I now go to school and I'm going to school to be a nurse, and while I'm waiting for the nursing program, I would love to get into med school. I plan to be an endocrinologist. I've never been able to think about school, it was always, "Am I going to have enough money? How am I going to work? Can I work? Am I too sick to work?" Now I don't have that anymore. I don't have that, am I too sick? I don't feel sick anymore.

My nurses, I have to thank. There's one in particular, and if she listens to this, she knows who she is. She was not just a nurse, but she did above and beyond. I'm sure there's nurses that are great out there, but she still my cheerleader today.

My name is Brittany Scarlet Valim, and I am aware that I am rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com 

In this episode, Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the rarity of their experiences.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com 

Stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media.

Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which provides sports and recreation opportunities for people with disabilities.

Cam believes that disabilities and rare conditions affect everyone in some way and advocates for inclusivity and respect. #RareDiseaseDay

My name is Cam Wells. I am a stroke survivor and I hold four diplomas from St. Clair College. After getting the first one, which is journalism, I came to realize there's a great imbalance in the way disability stories are typically portrayed in the media. Portrayed as either really bitter or really inspirational. You don't often see the middle ground. I figured after graduating, I could set myself the task of trying to change all that. I've been actually doing a show [Handi Link].  for 15 years now. As a person with a disability myself, I've come to appreciate that there are so many beautiful shades out there to be appreciated. I've actually been honored both locally and nationally. I'm a nominee for Canada's Disability Hall of Fame. God willing, I'll actually get it sometime.

I've interviewed everyone from a cast member of TV's Breaking Bad to a couple from Corner Gas, but really the best stories are the ones that come totally out of the blue. Like during the opening of the pandemic, there's a quadriplegic pilot, a friend of mine who had lost I think it was his home and his vehicle to a fire. The health restrictions didn't allow people to do very much, but this town got together and they said, "We want to rebuild for this guy. He's part of our community." So they took it upon themselves and did what they could to help him out.

I was your typical kid. I didn't know much about the world beyond just your typical kid. You go to school, you spend time with your friends and family. That was my world. September 29th, 1995, I was eating a can of frozen juice, I remember. I was at school having lunch and I thought I was having a brain freeze. Must've been the world's biggest brain freeze, because it resulted in a first round of neurosurgery and six days in a coma, which is I might add, the only time in my whole life I got enough sleep, but I couldn't move my left side.

For 35 days, I was in the hospital and went through various rehab procedures only to find that part of the anomaly in my brain had been left behind. They couldn't get it. I had what was essentially an experimental procedure at that point. I was the youngest kid they had ever done it on at this hospital. It wasn't available where I was, so thanks to a long and tedious insurance battle, ultimately, we were able to get what was called gamma knife surgery and successfully remove the anomaly.

I came back a different person. The truth is, I would not change it for anything. I basically discovered who and what I am spending time among people with disabilities and various rare conditions. In an academic sense, yeah, you can learn the medical model of this condition may be this or that, but you can't learn the strength factor. For every condition out there, there's always that one unaccountable person who's defied the odds. The best way of learning about such people, just spend time with them. Share a meal, share some time, tell them a bad joke, what have you.

Probably the biggest moment for me was... and I’m not real proud of this, but I chose entirely the wrong program my first year of college, entirely the wrong thing. I figured because I was working in a job related to the field, I'd be good at the academic side. I was not. I actually found myself academically dismissed from the college. Through various acts of misunderstanding, I was basically forced out and spent an entire summer begging to get back in. But when I found myself doing the correct field of study, something I could do, a journalism scholarship was granted to me by a disability group that I now work for. That's where I met Egidio Novelletto, a man who was advocating for his people.

I grew more and more fascinated by the work they were doing, and I started writing articles on the subject and even did a field placement doing public relations materials for them. I realized that so many stories are just not shared. You look at a traditional sports page and you'll see some great athletics, but every night of the week, there's disabilities athletics. There's people who medically complex. They're out there doing it. They're putting on a great show, playing a great game, but where is the representation of that?

Now, it was a long gap between my years in elementary school, which I was in when I had the stroke and my years in college, but the funny thing is the reporter who did the story on the experimental surgery I alluded to was actually later one of my professors. As a graduation gift, I gave her what may be the only surviving copy of that footage.

I became more and more fascinated by the world of disabilities, and since I was doing PR for them, I wasn't able to do anything with the radio station at the time, but the program director, she left the door open. She basically said, "If ever you want to do anything, come and pitch a show for us." Basically upon graduating, I went to them and I said, "Hey, can I do something on disability issues?" Well, the rest is history. However, I realized that there were others involved in similarly interested stuff.

I actually worked with a team in 2013 to release a guide for radio stations on accessibility. Some of the things people don't think about like adapting your physical space, or some of the language you use. Even things as simple as the lighting for people with seizure disorder. I'm coming to realize that I wasn't the only person who actually wanted to see the best in people, wanting to see them living up to their own strengths. It was really an eye-opening experience.

One thing I always have maintained, when a person with a disability gets up and they make toast, that is not inspirational per se. That is called breakfast. That is a very human thing. But really people with disabilities, they do what they do just to live the best life they can. That is the principal reason behind my work.

As a trained reporter, I love a good story. I love hearing tales of what society doesn't think is possible. I thrive on that. But yeah, in a way, owning it for myself is part of the process. One thing that I've shared any number of times, I had a childhood bully, horrible, horrible experience, I might add. He used to try and stick magnets to my leg to see if it was real, and as I do the show sometimes when I'm interviewing somebody working with younger kids, I think to myself, "I don't want anyone to have those feelings that I experienced in my own youth. I don't want anyone to ever ask the question, am I good enough?" Knowing that you're rare, knowing that you're unique is a way of owning it.

I have a friend, Daniel Brenner, great, great guy. He's actually a robbery survivor. He was shot as a child and witnessed several people in his family being essentially murdered in front of him. He was told he'd never walk again, but he picked up a guitar and he used a form of self-healing. He actually gets by just fine now. In fact, I have another friend named Renee who runs a music studio, and she was looking for a teacher, so I introduced them and now they're working together.

One of my primary roles in the disability community is working for the Italian Canadian HandiCapable Association, which is an organization that does sports and recreation for persons with disabilities. It's my honor to work alongside them as they provide things like yoga, tae kwon do, soccer, all manner of things for people with disabilities who might not necessarily have any other athletic opportunity. Fact is, when you're out there and you're an athlete with a disability or anything medically complex, you're not thinking about the factors that might hold you down. You're not thinking about somebody telling you you're not good enough or you'll never do that. You're just living in the moment and enjoying the game. The ICHA was founded by a man named Egidio Novelletto, whose son wasn't allowed to participate in a traditional soccer program, which was a very eye-opening experience for him. He decided to found a charity, and working with various levels of government, he was able to build a complex and establish something meaningful for persons with disabilities to be a part of. Normally, that's where it comes from. Having somebody personally connected, it's usually the gateway.

Truth is, when it comes to disabilities, rare conditions, they affect us all. There's a term I heard in my work once, not disabled yet, meaning we prepare terms of respect and inclusion. We're only making our own futures better in so much as we're all affected. If you pass 10 people in the street, somebody's got some factor that makes them unique. Somebody has a mental health concern or an emotional disability, or maybe somebody in a wheelchair.

One of my primary sources of information is NORD, the National Organization for Rare Disorders. I consult them on an almost weekly basis to reach out to disability and rare disease groups around the world. My thinking is if it's affecting one person here, it's affecting others out there. I figure it's a universal concept, or rather a series of universal concepts. Yeah, you can solve the problem for yourself at home. That's great, but if others around the world don't have the same access to medical information or don't have the same resources or even wherewithal to ask those questions...

A few years ago, I actually interviewed an accessible theater in China and I might add I had a very difficult time placing that call due to various satellite connections, but they actually have this great thing where they have a sign language interpreter in stage productions. However, they're an acknowledged character. They're part of the show. Are they providing a service for the audience? Sure they are, but they're actually included. It's shown me what the world really is, if that makes any sense. I've met people and learned things I never would have otherwise.

Honestly, one of the greatest people I ever knew, Dr. Marcia Rioux, she was the head of Disability Rights Promotion International, God rest her soul. She introduced me actually to one of the UN Representatives who was involved in writing some of the disability legislation that has now been embraced pretty much the world over.

The work I do, there is no end, honestly. It's a stepping stone, but it's incumbent on everyone to try and take that step forward. I always say on the air, it's not about an immediate cure, but it's about the work towards getting there and disability, rare conditions, they affect us all. Maybe you're not the one affected directly. Maybe you're friends with a caregiver, or maybe you just happen to have a friend of a friend. It's the degrees of separation.

You can't look at any family. You can't go back all the way or as far back as humanly possible and not find some factor that makes a person unique or rare. As we go, we gain understanding. Look at things like chronic fatigue syndrome. That's a big one. 20 years ago, doctors would argue, "No, that's not a thing. You're just getting old. Just go home, get some sleep. These days, we look at it and we recognize this is a condition. It's about taking the next step forward. It's not about listening to anyone who says, "There is this glass ceiling. This is as far as you can go." Progress is built on the idea that a person will test it for themselves.

I had a professor once, a lady I actually have a lot of respect for now who told me it was physically impossible for me to pass some speed drills in my college days, because I only type with one finger. My exact response, "Watch me." And I got through it. There's one story I would like to share as a shout-out to some of the people that I've had the pleasure of meeting over the years. You never know who's going to be connected to who, so keeping an open mind and supporting others.

27 years prior to this, I remember there was a cartoon I loved watching. After the stroke, it was part of my rehab. It was my one half-hour during the week that I didn't have to think about the rehab or the pain. An organization I worked with provided some promotion for Easterseals. They happened to have two of the voice actors from that show speaking at an event in Windsor. So I called in a favor, got photos with them, autographs, and just got to share a little bit of their story. After all those years, I was able to say, "Your show saved my life, so thank you for that." It was actually the 90s X-Men. I was a bit of a comic enthusiast. I actually got to meet Gambit and Rogue, nicest people in the world. They were so kind to me, I cannot stress that enough. But the fact that I had a chance to actually tell them what their work had meant to me.

It's important in any condition, any rare disease, just to acknowledge when somebody is there, when somebody does some good. Yeah, there's a lot of hardships people have to endure, but there's always support and if you find the right people and you show them that you appreciate what they do, it just stays with them.

My name is Cam Wells and I'm aware that I'm rare.

@RareDiseases @DRPI_global @EasterSeals @CJAMFM 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com 

In this episode, stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media.

Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which provides sports and recreation opportunities for people with disabilities.

Cam believes that disabilities and rare conditions affect everyone in some way and advocates for inclusivity and respect. #RareDiseaseDay

@RareDiseases @DRPI_global @EasterSeals @CJAMFM 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com 

Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the use of magnetic resonance imaging (MRI) in monitoring pulmonary hypertension patients. Dr. Bogaard explains that MRI is a valuable tool for assessing the function and structure of the right heart, which is crucial in determining the prognosis and long-term outcomes of patients with pulmonary hypertension.

My name is Harm Bogaard. I'm a pulmonologist here in Amsterdam in the Netherlands. I work at the National Expert Center for pulmonary hypertension patients. We have a clinic, obviously, with patients mainly with idiopathic and hereditary PAH. We also have a chronic thromboembolic pulmonary hypertension (CTEPH) program with diagnostics, surgeries, balloon pulmonary angioplasty. In addition to my clinical work, we have a translational lab to find out more about different forms of pulmonary hypertension and its treatment.

Today, I would like to tell you a little bit about how we use magnetic resonance imaging in the Netherlands to monitor our pulmonary hypertension patients. We started doing this 20 years ago to use non-invasive imaging by magnetic resonance imaging or MRI to basically follow the function and structure of the right heart in our patients. It's been known for quite some time that the prognosis and the long-term outcomes in patients with pulmonary hypertension are really determined by the capacity of the right heart to adapt to the high load. Exercise testing, like the six-minute walk test, provides some indirect information about the functioning of the right heart. NT-proBNP does the same thing. Echocardiography also gives you some clue as to how well the right heart adapts, but the right heart is quite difficult to understand and also to image by echocardiography. We've found some 20 years ago already that MRI is really a fantastic tool to get a really good grip on the adaptation of the right heart.

We started following our patients (around 2,000) with MRI. We did a lot of research, so we showed that MRI gives very valuable prognostic information. We also learned a lot about how physiologically the right heart adapts to high pressure. Now, we've really adopted the use of MRI in our routine follow-up. So, it basically means that we hardly ever do a repeat right heart catheterization in our patients. We used to do many. We used to do like four months after initiation of treatment, and then after one year, after two years, after three years, we did a lot of right heart catheterizations. But now, we've gathered so much data with MRI, we really know that we can get very similar or sometimes even better information by doing a non-invasive MRI.

The setting in our hospital is quite unique because the hospital is devoted to imaging and we get some really good deals basically by the hospital or administration to do this in a very cheap way and to get the personnel to do this. I know that it's difficult in many other hospitals. There's limited time available for MRI scanning, it's expensive. I wish the situation would be better because I really feel that this is a great way for patients to be followed.

The only downside is that some patients are claustrophobic. It is a tight space. Fortunately, the more modern MRIs are a little bit bigger, so it doesn't feel so cramped anymore, but some people do have some problems with getting into this tube. Fortunately, it's only a small minority and most of our patients we can follow really well by doing MRI.

We can even do some more sophisticated testing. We have the possibility to do exercise in the MRI, so patients are on a recumbent bike. They can stress their heart and we can look at how the heart adapts to exercise, which gives a ton of additional information. By using different techniques, we can look at the development of scar tissue in the heart, which is also important prognostic information development fibrosis in the right heart. We can look at how well the heart readjusts when given treatment. We can easily look at basically how much treatment you need to give to get a really good response in the right heart. We make great use of it and we hope that the technique can be implemented in a much larger scale. Maybe in clinical management of patients, but also as an endpoint in trials MRI could be really useful.

In many countries, right heart catheterization is still considered the best way to diagnose your patients in the first place and also to follow your patients. I think for a proper diagnosis, I fully agree, a right heart catheterization is still necessary, because right heart catheterization gives you the only real means by which you can make a distinction between real pulmonary vascular disease or other causes of pulmonary hypertension. Even though there are definitely developments in imaging, if we still see it the same in 10 or 15 years, I think then we probably (will) get rid of a right heart catheterization altogether. But right now, for diagnosis, I still have to agree that the right heart catheterization is what you need to do. But for follow-up, by now, we really know which parameters that you get from a right heart catheterization, which are informative; which is basically stroke volume, which is the most informative value from a right heart catheterization. We can derive this perfectly with MRI.

In the follow-up of your patients, I don’t think there's a real need to do a repeat right heart catheterization unless maybe you do still have some doubt as to whether you have the diagnosis righ. Maybe that's still a reason to do it. But in general, I think all of the important prognostic parameters that you can get from right heart catheterization, you get from MRI.

Of course, I can recommend to ask for an MRI. But yeah, if the local situation is as such that is not available, then, yeah, there's maybe not much that you can do other than using the techniques that are available. I'm not saying that you can only follow your patient right with MRI, because there are alternatives you can do a right heart catheterization and be informed in that way. So, it's not that you're not getting the right treatment, but it's a little bit more non-invasive of course, if you can do an MRI. So, if it is reimbursed, if there are possibilities, then go for it. Ask your doctor to get an MRI.

So here in the Netherlands, we are in a situation that we can use MRI and I'm really grateful for it and it's really helpful. I'm not saying that you cannot follow your patient in a proper way if you don't use MRI. There are definitely other ways to do an excellent monitoring and provide the best care to your patients, but I do know that MRI makes it a little bit easier. To be able to do this in a non-invasive way is very comfortable for the patient friendly. So, I hope the technique will become more widely available.

I'm Harm Bogaard and I'm aware that my patients are rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com #phawareMD 

Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the use of magnetic resonance imaging (MRI) in monitoring pulmonary hypertension patients. Dr. Bogaard explains that MRI is a valuable tool for assessing the function and structure of the right heart, which is crucial in determining the prognosis and long-term outcomes of patients with pulmonary hypertension.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com #phawareMD 

Pulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspects of one's well-being, including physical, mental, emotional, and spiritual health. She encourages others to find their purpose and make positive changes in their lives, even in the face of challenges. 

My name is Dawn Clarke. I am currently residing on the Mississaugas of the Credit First Nation, Hagersville, Southern Ontario. This is my mother's homestead, where she's come from. She's indigenous. My father is from Cape Breton, Nova Scotia. He is non-indigenous or what we used to call him, Caucasian. I grew up in the military life, my father was in the military. My mom was quite young when she had me and got with my dad and started moving around to different places. Life at the beginning was a little complicated for me. Both parents were strict and that's how my upbringing was with all the things that go along with that. So I became a really quiet person. I should start off too by saying that I did a have congenital heart defects and heart surgery at four months of age. Incidentally, my parents were not at the surgery, so they were about two hours away when I did my surgery. They were back home.

They didn't have a vehicle, so I had no parent there at hospital during my open heart surgery. I did find out about that years later. I believe that there's a lot of childhood traumas that help lead up to the health of where people are now into adulthood. That was something that I had to deal with. So I did get surgery at infancy. I had intended on joining the military. I had actually passed all my testing. I did really well. The only thing I was waiting for was a phone call to say, "Okay, it's basic training time, let's go." For some reason, that call never came. 

I ended up going to school from nursing. When my children were one and a half and three and a half, I ended up going into nursing school. It was quite difficult to say the least as a single mom, single parent, and going through nursing school. Somehow we made it through though. With the help of family and relatives, we did get through that. But after a number of years, I had been really kind of wondering about doing mental health work. I did dabble in some training here and there with the mental health field, but it was kind of something that my brain was always wanting to lean towards. 

A few years ago, I started developing shortness of breath. I was down in weight compared to where I had been for a lot of my adult life, probably about 180 pounds, which is still overweight for a short person. I started getting symptoms when I was working as a nurse. Weight started coming on again. I thought, "Oh, must not be as active as I was before." I was getting a high blood pressure readings, and that had never been an issue before. So even with my cardiac history, I had still been fairly healthy. 

I had been trained to do palliative care nursing, so I was seeing a lot of palliative care patients. I got to the point where my troubles with my breathing became more of an issue, especially to the clients than they were… me coming in, trying to get up the stairs to see them, sitting down and taking a couple of minutes to catch my breath, at a point where I was starting to bring my oxygen in with me to do the stairs or to get from point A to point B to their rooms or anywhere to see them.

By this point, I had gotten quite bad. I finally decided I just can't do this anymore. I'm going into houses that are difficult to maneuver around, also into smoky houses that I always despise smoke, cigarette smoke, and having to take care of myself in front of patients before I could care for them. It was just getting to be way too much. The physical maneuvering of patients became very difficult and I just couldn't keep up anymore.

On top of these things. I also have scoliosis, and it's something that I was diagnosed with when I was 12. So between my back and the pain, between the weight gain and the shortness of breath, it just became very difficult to move people, to turn people to do any things that they needed to get down on the floor to do leg and feet dressings, if they happen to be sitting on a couch, for example.

Yeah, it just became too much. I tried to push further, but I just couldn't. Mentally, I was starting to deteriorate as well. I knew there was something wrong by this point, and I hadn't quite got the diagnosis yet of PH, but it did soon come after pushing and trying to get in to see a doctor.

I think I was diagnosed in June of 2019. I went off work July of 2019. Probably for the next year I was wearing oxygen pretty much 24/7. Sitting in a chair, so where I am now, just maneuvering myself around became quite difficult and caused me a lot of shortness of breath. It was to the point where, "All right, I don't think I can do this anymore." So I had to give that up, give that role up. I did not give up my nursing license, I still have it, but I am now on... What's the term? Non-practicing. So I'm a non-practicing registered nurse. 

I decided to hold onto that because it was a big part of me. It's a big part of my life. It was a great accomplishment for me to get through schooling and having two little ones at home as a single mom. It was something that was really hard to register in my brain that you can't do what you've been doing, but I'm hanging on to this because I knew still at that point, even though everything kind of took a dive down, including my mood and everything else, my look on life, my outlook and the uncertainty, it took a huge chunk out of my wellbeing.

I decided at some point, probably within that first year, "Well, okay, what can I do? I know that I have been thinking about changing careers. I've been thinking about giving up at least the physical part of nursing." There was something still calling me to the mental health world. Well, I started acrylic painting and I sang. I had sang for many years and I liked writing, and that's most of my life, as well. Not that I did a lot of it, but I did like it. And one of my goals since I was a teenager was to write a book, which I still haven't done, but I've started a couple of things.

I've written a few little things, poems. I have a long poem. Those kinds of things all mean a lot to me as who I am as a person. I decided at some point along the way, I'm going to somehow combine the creative things with the mental health and the background of nursing and help other people on their journeys and their wellbeing, as well. 

That became my focus. Not to say that every day is easy or that I can focus on these things every single day. There are still difficulties. I managed to change my viewpoint and my outlook on life and my perception of life, and I managed to change those things to a positive light and decided you can still live. You don't have to lay back and wait to die because what is the purpose of everything that I've done and everything I've wanted to be?

I always, always felt like I had a deeper purpose in life. Some people are good getting their purpose fulfilled through looking after their family or through working in a community, and that's enough. But there's something more that I'm meant to give. I'm still not 100% sure what it is, but I think I'm finally going down the path now. I decided to paint. There was a year, I think between 2019 and 2020 that I really didn't do much of anything, but I think that was my angry year. That was my diagnosis year. It was my spot that made me take a look at my life and decided to change my path. I could lay back and die. Life's over for me, boohoo. I know that's a lot of us. That's where we are. That's where we have been or we're getting to that point. But there is a point where you can take control of what you can. 

I had to look at my blessings. So I had to look at, I have my sons. At that time they were both home with me. I have one still home now. I have my mom, my dad, my sister. Even though I still had a lot of traumas to deal with, which I was currently working through and still am, those people were still close to me and important to me. I was now around my mom's family, side of the family. They were a huge support.

I felt like I couldn't quite leave this area and move away, because I thought about moving down east many times, but I had to use what I could. Also because of being from First Nation's community, I thought there's so much I can do. So I'm going to combine all the things I know and put them into a wellness journey for other people. I'm still not 100% sure what that's going to look like, but I have done many paint parties, you might call them. A lot of them are workshops. I get hired by organizations mostly for say, a personal paint party. Probably 95% of what I have done has been organizational workshops. I'll get people thinking about positive things, so what do they want for themselves that day or that week or month, or what would they like to wish for somebody else?

It could be someone they don't necessarily like so much. What do you wish for that person or yourself? Think of one word or a symbol. It could be a heart. It could be anything and you put that down on the backside of your canvas. You write happiness or love, unconditional love. Anything that you can think of or a heart or a star or anything and that's going to be your focus during that painting. The painting session, you go forward with that thought in your mind. We really try to keep negative thinking out of it because it's very, very easy for all of us to think negatively and go, "Oh, I'm terrible at this," and oh my goodness, there's always negative that we can throw to ourselves. We really try to take that out of the equation and just keep everything to a positive as much as we can. 

I would say that normally it does work and it helps most people to stay in a more positive mindset. Thinking positively, looking after my mental health that's been a huge, huge component of my wellbeing. Continuing to be in therapy because therapy can be for everyone, not just seriously ill people. It keeps us on track. That has helped me by looking after the mental health piece, my emotional piece, my spiritual piece, and my physical. We know that physical and mental health and emotional, spiritual all go together. We can't look after one and not the rest. We can't expect to do well in one and expect everything else to catch up. We've got to purposely look after all of those domains. I find by doing that and keeping myself in check with my mental health as well, even my spiritual health. By spiritual health, I mean even things like connecting to nature. Learning how to connect with nature. Learning how to breathe. Learning how to be calm and maybe put yourself in a better place. 

That becomes really easy to do once you've done it a bunch of times. You may need to focus and push yourself to do it at first, but eventually it's just an amazing place to be. So with meditating, learning how to focus, we can do so much for ourselves. People need to start looking at that, giving themselves that gift because it's there. It is in all of us to do. So by looking at all those domains and looking after each one, we do better for our physical health, as well. My physical being has improved. My breathing has improved. My energy level has improved. My focus is starting to improve a little more, because that's been very difficult to do.

But all in all, if you look after all of those things in your life, you become a better version of yourself. You start to see the world in a positive light again, and not think so much about how much life I have left. I still do think of that sometimes or, "When am I going to die," or, "What's the purpose? If I'm going to be gone in a year or 10 years or five years?" The purpose is because you need to be here now. You need to be here. You're on this earth. You have purpose. You can take from everything that happens to you in your life and pull it in and switch it around, bam, put it out as something that you can do for yourself and for other people. That was my choice. It's not to say that I don't ever struggle with my mood or with triggers or anything that comes up in my life, but I need to know how to come out of that.

With everything I've learned through somatic therapy, through there's a thing called FIT. It's focused intention technique. I learned how to do that, as well. There is training for that. It's something you can use on yourself, and it's something you can use to help other people. Give yourself the gift, I'll use that word again, the gift of life. You get to go forward in the way you want to, in the way that you can. Just do it in whatever way you're able to. If you look after all the pieces of yourself, it gets easier. I guess that would be the biggest thing is transforming my life to meet the needs of not just myself, but others as well. But there came a time where I had to look after just myself, and that was fine. I decided that's okay. This is what I need to do. 

My last job was helping to kill me. It was helping to dive me down lower in depth, because I wasn't able to focus on myself and my needs. That really woke me up. It made me go, "Yep, I guess I have to listen to myself now and listen to my body. It's telling me things and do something about it. Don't just keep pushing it back. Do something about it." I ended up having to move from where I was. My rent was going up a little higher every year. I could no longer afford to live there, because I wasn't working, at least not getting a nursing income. So my sons and I had to move. Thank goodness for our First Nation. They had been building a new set of townhouses and one had just been completed. We were lucky enough to get to move into that right at the time I was running out of money from whatever resources I could get it from.

We moved in here. The rent is significantly lower. I know not everybody has that opportunity, but it enabled me to start looking at what I wanted in life instead of worrying about the financial piece. So even if it's a matter of you have to move in with someone or a relative or something where you might not have as much, you might have to give up some things, which I did, but at least it got me thinking about my life again and having a purpose. So that's where I am now. 

My name is Dawn Clarke, and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com @phacanada 

Pulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspects of one's well-being, including physical, mental, emotional, and spiritual health. She encourages others to find their purpose and make positive changes in their lives, even in the face of challenges. 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com @phacanada