#Pulmonary disease

[reasonsforhope]

Less than three months after U.S. Senator Tammy Baldwin and her colleagues launched an investigation into the four major American manufacturers of inhalers, three of the companies have relented, making commitments to cap costs for their inhalers at $35 for patients who now pay much more.

25 million Americans have asthma and 16 million Americans have chronic obstructive pulmonary disease (COPD), meaning over 40 million Americans rely on inhalers to breathe.

Inhalers have been available since the 1950s, and most of the drugs they use have been on the market for more than 25 years.

According to a statement from the Wisconsin Senator’s office, inhaler manufacturers sell the exact same products at a much lower costs in other countries. One of AstraZeneca’s inhalers, Breztri Aerosphere, costs $645 in the U.S.—but just $49 in the UK. Inhalers made by Boehringer Ingelheim, GlaxoSmithKline, and Teva have similar disparities.

Baldwin and her Democratic colleagues—New Mexico Sen. Ben Ray Luján, Massachusetts Sen. Ed Markey, and Vermont Sen. Bernie Sanders—pressured the companies to lower their prices by writing letters to GSK, Boehringer Ingelheim, Teva, and AstraZeneca requesting a variety of documents that show why such higher prices are charged in America compared to Europe.

As a ranking member of the Senate Committee on Health, Education, Labor, and Pensions, Baldwin recently announced that as a result of the letters they had secured commitments from three of the four to lower the out-of-pocket costs of inhalers to a fixed $35.00 rate.

“For the millions of Americans who rely on inhalers to breathe, this news is a major step in the right direction as we work to lower costs and hold big drug companies accountable,” said Senator Baldwin.

A full list of the inhalers and associated drugs can be viewed here.

It’s the second time in the last year that pharmaceutical companies were forced to provide reasonable prices—after the cost of insulin was similarly capped successfully at $35 per month thanks to Congressional actions led by the White House.

-via Good News Network, March 25, 2024

#united states #us politics #us senate #tammy baldwin #bernie sanders #big pharma #health care #us healthcare #inhaler #asthma #pulmonary disease #healthcare access #affordability #disability #good news #hope

[balajihospital]

Balaji Hospital | Nephrology Specialists for Kidney Diseases

Balaji Hospital's Nephrologist providing expert care for kidney health & diseases including diagnostic tests & advanced treatments like dialysis & transplantation

#Nephrologist and Nephrologist #Nephrologist #Guj.Factory rules #Work of H.I.R.A #Retainer ship of doctor to company(50-200 employees) #Emergency Empanelment of industry for hospitalization of workers #Preoperative physician #Anesthetist #Pulmonary disease #Chest Physician #Diseases related to hormones #Endocrinologist #Best treatment for ear #nose & throat diseases #ENT #Bariatric Surgery #Solid Organ Transplantation #Pediatric Surgery #Thoracic Surgery #Vascular Surgery #General Surgery #Community gynecology #Materno-fetal medicine #Gynecology and Obstetrics #Infectious diseases #Vadodara #Gujarat #India

[herbal9remedies]

Medicinal Plants Evrey Thing You Need To Know

The ancient knowledge of using plants, for healing is often ignored in a world where modern medicine is dominant. However, 80% of the population depends on plants for some aspects of basic healthcare. For instance, Echinacea can decrease occurrences by 58% while St. John’s wort can address depression effectively as prescription medication. The effectiveness of plants in healing cannot be denied. Nevertheless, it is important to be cautious, as improper use of remedies can pose health risks. Approach the pharmacy with care and reverence as it conceals health benefits that science is just starting to grasp. read more https://herbal9remedies.com/medicinal-plants/

#spotify #healthcare #health & fitness #health and wellness #mental health #united states #us politics #us senate #tammy baldwin #bernie sanders #big pharma #health care #us healthcare #inhaler #asthma #pulmonary disease #healthcare access #affordability #disability #good news #hope

[frenchygv]

Today is Rare Disease Day and if you didn't know I suffer from a rare pulmonary disease called Lymphangioleiomyomatosis (LAM) which has been a physical, emotional, and financial challenge for me and my family, and that's why I am passionate about advocating for awareness about rare disease.

Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.

On Rare Disease Day we call for action for people living with a rare disease to have equal opportunities to realise their full participation in family, work and social life.

The long-term goal of Rare Disease Day over the next decade is increased equity for people living with a rare disease and their families.

With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities. In order to achieve equitable social inclusion for people living with a rare disease, they must first have access to holistic care covering the 360° spectrum of health, social and everyday needs as argued in a EURORDIS position paper on Achieving Holistic Person-Centred Care to Leave No One Behind.

The UN 2030 Agenda and its Sustainable Development Goals (SDGs) provide an important framework for addressing the full spectrum of needs of people living with a rare disease. The Goals target important issues including education, gender, work and inequality. Addressing the needs of people living with a rare disease is central to achieving the UN 2030 Agenda, the SDGs and its pledge to leave no one behind.

Any country can today take decisive action to support a greater integration of rare diseases in its UHC (Universal Health Care) model or approach. It is possible to make great progress at a rapid pace even if starting from very little. Governments can focus on 1) extending coverage to people living with a rare diseases by promoting visibility, codification and diagnosis; 2) Including other services and adapting existing ones to the needs of the rare disease population; and 3) Protecting the rare disease population from further financial hardship.

Source: rarediseaseday.org.

To learn more about rare diseases and help visit: rarediseaseday.org and thelamfoundation.org.

🇪🇸 Hoy es el Día de las Enfermedades Raras y si no lo sabías, sufro de una enfermedad pulmonar rara llamada Linfangioleiomiomatosis (LAM) que ha sido un desafío físico, emocional y financiero para mí y mi familia, y es por eso que me apasiona abogar por la concientización sobre las enfermedades raras.

El Día de las Enfermedades Raras es la campaña internacional oficial de sensibilización sobre las enfermedades raras y se celebra anualmente el último día de febrero. El objetivo principal de esta campaña es aumentar la conciencia entre el público general y los tomadores de decisiones sobre las enfermedades raras y su influencia en las vidas de las familias que viven con estas condiciones.

En el Día de las Enfermedades Raras hacemos un llamado a la acción para que las personas que viven con una enfermedad rara tengan igualdad de oportunidades para lograr su plena participación en la vida familiar, laboral y social.

El objetivo a largo plazo del Día de las Enfermedades Raras durante la próxima década es aumentar la equidad para las personas que viven con una enfermedad rara y sus familias. Con más de 300 millones de personas en todo el mundo que viven con una enfermedad rara, unimos esfuerzos a través de fronteras y en medio de más de 6000 enfermedades raras para abogar por un acceso equitativo al diagnóstico, el tratamiento, la atención y las oportunidades sociales.

Para lograr una inclusión social equitativa para las personas que viven con una enfermedad rara, primero deben tener acceso a una atención holística que cubra el espectro de 360° de las necesidades sanitarias, sociales y cotidianas, como se argumenta en un documento de posición de EURORDIS sobre Lograr una atención holística centrada en la persona para No dejar a nadie atrás.

La Agenda 2030 de las Naciones Unidas y sus Objetivos de Desarrollo Sostenible (ODS) proporcionan un marco importante para abordar todo el espectro de necesidades de las personas que viven con una enfermedad rara. Los Objetivos se centran en cuestiones importantes como la educación, el género, el trabajo y la desigualdad. Atender las necesidades de las personas que viven con una enfermedad rara es fundamental para lograr la Agenda 2030 de las Naciones Unidas, los ODS y su compromiso de no dejar a nadie atrás.

Cualquier país puede hoy tomar medidas decisivas para apoyar una mayor integración de las enfermedades raras en su modelo o enfoque de ASU (Atención Sanitaria Universal). Es posible lograr grandes avances a un ritmo rápido incluso partiendo de muy poco. Los gobiernos pueden centrarse en 1) ampliar la cobertura a las personas que viven con enfermedades raras mediante la promoción de la visibilidad, la codificación y el diagnóstico; 2) Incluir otros servicios y adaptar los existentes a las necesidades de la población de enfermedades raras; y 3) Proteger a la población de enfermedades raras de mayores dificultades financieras.

Fuente: rarediseaseday.org.

Para obtener más información sobre enfermedades raras y ayudar, visita: rarediseaseday.org y thelamfoundation.org.

#rare disease #rare disease day #rare disease awareness #rare disease awareness day #show your stripes #show your colors #globalgenes #the Lam Foundation #lam #lammie #lam patient #rare disease patient #pulmonary disease #Lymphangioleiomyomatosis #rare is strong #rare and strong #frenchygv #frenchygvart #typography #illustration #botanical illustration #botanical art #nature #flowers #digital painting #digital art #drawing #painting #hope #symbolism

[elviramac22-blog]

Ron Cephas Jones "This is Us" Actor Dead

Ron Cephas Jones best known for his role as William Hill in “This is Us” is dead at the age of 66. He died due to a long standing Pulmonary issue. He needed to get a lung transplant as of 2020. His representative said to People magazine that “throughout the course of his career, his warmth, beauty, generosity, kindness and heart were felt by anyone who had the good fortune of knowing…

View On WordPress

#Dead #Emmy Award Winner #Pulmonary Disease #Ron Cephas Jones #Sterling K. Brown #This is Us #William Hill

[innonurse]

#ai #pulmonary disease #nih #artificial intelligence #medtech #health tech #hypertension #cardiology #ecg #eko #machine learning #stethoscopes #pcg

[willowreader]

Statistics don't lie It just blows my mind that people can't see or understand that COVID is a dangerous virus that can damage your body. Getting infected multiple times will have serious consequences for many.

#covid #sars cov 2 #long covid #heart issues #heart damage #diabetes #cancer #alzheimers #pulmonary embolism #atrial fibrillation #cardiovascular disease #hypertensive heart disease

[creepyscritches]

Unga bunga saw a new condition this morning and I'm giddy to flesh out my knowledge w medical journals for fun heehee

#Creepy chatter #Hemosiderosis :3 #Technically it's idiopathic pulmonary hemosiderosis but I'm starting base level and then going into spec manifestations #Still riding the high of my one and only ever case of diabetic myonecrosis #So unusual that there wasn't anything really in place to capture it #I BREAK the International Classification of Diseases 10th clinical modification #I FIND the myonecrosis I SLAP the guidelines around bc they didn't consider diabetic manifestations #The cool thing was the patient was THRIVING! :D what a kick ass doctor to whip that shit into nearly sub-clinical levels #Medical cw

[bpod-bpod]

COPD meets COVID

Persistent wheezing, coughing and breathlessness. These are all symptoms of chronic obstructive pulmonary disease (COPD). Add a lung infection on top of COPD and these symptoms worsen. To better investigate how COPD affects lung infection at an individual level, researchers created organoids – lab-grown tissues that mimic organs – using tissue samples collected from the airways (bronchi) and nasopharyngeal areas of healthy and COPD patients. Fluorescence microscopy of nasopharyngeal (pictured, left) and bronchial (right) organoids from healthy (top) and COPD (bottom) individuals revealed more goblet cells (magenta) in COPD organoids – this mimics what's seen in COPD patients. SARS-CoV-2 infection of COPD organoids showed that viruses replicated more in bronchial than in nasopharyngeal organoids. This is also in line with real-life disease, where the bronchi are the main site of infection in severe COVID-19 cases. This lab-grown system may therefore prove useful in modelling lung disease and infection in individual cases.

Written by Lux Fatimathas

Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore and Programme in Emerging Infectious Diseases, Duke-NUS Medical School, Singapore, Singapore

Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)

Published in Nature Communications, December 2022

You can also follow BPoD on Instagram, Twitter and Facebook

#science #biomedicine #covid19 #covid #copd #chronic obstructive pulmonary disease (copd) #organoids #immunofluorescence #sars-cov-2

[valentinepills]

A Miracle for World PH Day 2023

TRIGGER Warning: Mention of Miscarriage in this post and unflattering photos of myself.

in December of 2019, I noticed a significant difference in my health. Shortness of Breath, even when walking a short distance, heart palpitations, cough & wheezing, chest pain and occasional nose bleeds. Untreated Anxiety and Depression associated with my Bipolar Disorder, Uncontrolled Diabetes and Intermittent Asthma were believed to be the cause of these symptoms despite my growing concerns. Each year my symptoms worsened. In February 2022, it had gotten so bad that I could not walk from my bedroom to my kitchen without feeling like I had just ran a marathon. My pulmonologist agreed that my condition was rapidly worsening and begged me to give a CPAP another try. I was also switched to the highest dosage of Advair and regular use of my emergency inhaler. My PCP told me to get my A1C down and consider weight loss surgery to expedite my weight loss journey. I was determined to do everything they advised, this way I could prove to them that something more serious was occurring. At this time, I had already quit smoking and began lowering my A1C.

To my surprise, June 30, 2022 it was confirmed that I was pregnant. It shocked me because a couple years ago in 2020 I suffered a miscarriage at 16 weeks. I was advised to consider birth control because my body could not hold a fetus. Well... they were wrong about that one! The doctor confirmed a healthy fetus made it’s way and there was a heartbeat. It was a miracle and I knew God had other plans for me. I prayed every day and every night, thanking my heavenly Father and thy Earthly Mother for all the blessings they bestowed upon me; also asking for guidance, clarity and strength to lead me in the right direction.

I began to communicate with my Perinatologist more as I learned to trust her. During an appointment in September 2022, I opened up and told her,

Doctor, something is wrong with me and I need someone to listen to me. I can’t do my seated exercise anymore and that concerns me. I can’t even walk in place but for 4 minutes, then I have to stop and lay down. I think something is wrong with my heart. I’ve been having these issues before I was pregnant. Please help me. I want to live.

She asked me had I seen a cardiologist. I explained to her that after an urgent care visit in May I was put on a heart monitor for a few weeks but no results were communicated to me. She fought to get my referral to a cardiology approved. My visit with the cardiologist in October is when I was told, I have Pulmonary Hypertension. An ultrasound of my heart confirmed that I had heart disease and heart failure.

My breath was too short for a sigh of relief. The weight on my chest applied pressure instead of being lifted. I was in my third trimester of pregnancy, when a right heart catheterization confirmed my diagnosis in November 2022. Then, the cardiology team with my healthcare provider advised for my care to be transferred to out-of-network team that can provide the care that I needed. I had gained over 40lbs in fluid due to heart failure and my new health team was confident that we could reverse it before labor.

My mother was in fear that she would lose her only daughter. I was in fear that I would never get to hold my daughter. My love was afraid that he would lose me and be alone. My father was scared and speechless. Everything made sense in these moments and everything mattered. It mattered who was there and who wasn't. It mattered where I was and where I was going. It mattered how and why.

3 weeks away from my due date, a team of 20+ assembled in the cardiac care unit to bring Zenobia in to the world. My father waited at home by the phone, my mother waited alone in the labor & delivery room and my love was by my side as they tilted me back and began to operate. After 4 hours of pre-op and 45 minutes of surgery, it was a success. My daughter was born, healthy and strong. Doctors, Nurses and many people stopped by to visit me when I left ICU, curious to meet the miracle baby and her parents. A nurse who was not in my station came to visit and said, 

"I hope you don't mind that I came to visit. Although I'm not your nurse, I was on call when the entire floor heard that you were being transferred to the cardiac operating room. Every nurse gathered and we prayed for you. Everyone is celebrating you, a miracle." 

My eyes filled with tears and joy. Other doctors and their students came to visit and were glad to see me. Another nurse encouraged me to tell my story and document my journey because it will inspire others. The doctors that worked directly with my care and surgery were impressed, proud and says that I'm their model story.

That was almost 4 months ago in January 2023 but also when my journey began. My team was honest with me, that labor and delivery was the least of their concern. Surviving postpartum, preparing for cardiac therapy and rehabilitation was top priority. I would be lying if I said it is easy. Most days I am sad. Learning to adjust to my new way of life has been challenging and difficult to accept. I promised myself to do all that I can to live, to change and to never give up. Meeting people who have PH and joining the association has been a great help to me and how I learned of World Pulmonary Hypertension Day on May 5, 2023. 

One thing I have learned since giving birth with Pulmonary Hypertension is how much time and creating memories mean to me. Also, how important it is to talk about how you’re feeling no matter how that looks for you or how it makes anyone else feel. It’s easy to look down and frown when you’re faced with this challenge. Make the conscious decision today, right now to look up and forward. Be good to yourself and your body. When you need to rest, do so and don’t feel bad for not being able to push through on bad days. You’re a survivor, a PHighter.

I have so much to look forward to. Raising my daughter, therapies and rehabilitation and none of it will be easy but I give praise to the Most High for this blessing. Thank you Lord for blessing every hand that was laid upon me. Thank you for hearing my prayers. Thank you for every person who prayed for me. Thank you for those who have been there and rooting for me. Thank you for giving me the strength and bravery to share what you have done for me and what you will continue to do. Thank you to everyone following me, befriending me and joining me. I got you. Let’s live, let’s fight for a cure.

#worldphday #worldphday2023 #pulmonary hypertension #pulmonary #pulmonology #cardiology #heart disease #lung disease #pregnancy #women health

[information20]

#pulmonary #disease #treatment

[balajihospital]

Balaji Hospital | Gastroenterology for Digestive Health Issues

Balaji Hospital's Gastroenterology showcases a team of gastroenterologists specializing in diagnosing & treating digestive health issues to enhance quality of life

#Gestrology and Gestrology #Dietitian #Guj.Factory rules #Work of H.I.R.A #Retainer ship of doctor to company(50-200 employees) #Emergency Empanelment of industry for hospitalization of workers #Preoperative physician #Anesthetist #Pulmonary disease #Chest Physician #Diseases related to hormones #Endocrinologist #Best treatment for ear #nose & throat diseases #ENT #Bariatric Surgery #Solid Organ Transplantation #Pediatric Surgery #Thoracic Surgery #Vascular Surgery #General Surgery #Community gynecology #Materno-fetal medicine #Gynecology and Obstetrics #Infectious diseases #Vadodara #Gujarat #India

[aby-off-topic]

Breaking news: my mom

My mom had to go to the ER for symptoms of defib, and she's been admitted for that and a possible pulmonary embolism. Now they are putting her on heparin (blood thinner) and running other tests. She's not 100% certain about her medications, and that tells me she's probably not been as good about them as she's been telling me. Honestly no surprise there.

So, here I am having to explain to the nurse my medical POA includes her being DNR but that the POA only goes into effect if she's deemed incompetent/incapacitated, and that means they need to ask her to update whether she's DNR, in case they need to make a decision before they can reach me.

And I also had to confirm various things about her medical history, like her insulin dependent diabetes and her dialysis for end stage renal failure. She's kind of like one of those renal failure guys in Kuroshitsuji... if those guys were also using opium or morphine to deal with diabetic neuropathy....

I have to regularly remind myself (on a nearly daily basis since I placed her in assisted living in 2019) that I must treat my mother better now than she treated me and my sister growing up. Treating her better is easy because the bar is set so low. Wanting to is another story.

ETA: I should specify she called me on her mobile phone from the hospital to say she's there and why. Later I got a call from her nurse.

#personal #me in real life #me irl #my mother #medical issues #breaking news #may 13 2022 #diabetes #renal disease #renal failure #end stage renal disease #defib #pulmonary embolism

[macgizmoguy]

#tb #ntm #Mac #mycobacterium #mycobacteria #chronic obstructive pulmonary disease #tuberculosis

[pikslasrce]

no wait this isnt just a ballad. its a COVID BALLAD

#hell of a year huh? die together? of what? pulmonary diseases innit? #eurovision #esc2022

[phawareglobal]

Joellen Brown - phaware® interview 465

Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one’s own health. She encourages newly diagnosed individuals to seek out support groups and emphasizes the need for early and appropriate treatment.

My name is Joellen Brown. I am in Newport Richey, Florida now. I was diagnosed 15 years in May with pulmonary hypertension. I was born in 1956 with a hole in my heart. Back then, there wasn't much information on correcting it or how they were going to go about doing it. I was about two and a half when I had my first open heart surgery and they put a patch on my heart. I went through the majority of high school, not being able to take gym, because they really didn't know if that patch was going to be pliable to exercise and all that. I was also told not to have any kids, which thankfully, I didn't listen to that. I ended up with three girls and no issues, and they were healthy. I've got three older sisters. I was the only one with the heart issues, so it wasn't anything like hereditary or anything like that. When I was about 40 years old, they told me that I needed to have another open heart surgery, because I had a tear in my aortic valve. So they went in and I have a cadaver valve. In my early '50s, I started noticing major weight gain and really breathlessness, tired all the time. I had been seeing a cardiologist all my life and nobody had ever mentioned that it was any kind of a lung or heart issue, it always had to do with the heart. I finally went to my regular doctor and she had me walk around the hall. At that time, my oxygen was 67%. I was sent home on oxygen. That's how my journey with pulmonary hypertension went. They first thought I had asthma, so I was put on an inhaler with the oxygen. That didn't work. I went to another cardiologist who was also a PH specialist. He's the one that diagnosed me with PH. But he had told me too, that I might have been born with it. But then again, back in the 1950s, there wasn't a lot of research on PH. So who knows? I might've had it all this life and not even realized it. So all that time, it's always been the heart thing. I'd always gone to the doctors. I didn't really have to worry about my weight, until after I had my kids and I had my second open heart surgery. That's when my weight started creeping up on me, which might've been back then, part of PH, I don't know. So now 15 years later, they're saying that my PH is from congestive heart failure and scoliosis, which is what I was born with. I was born with scoliosis, with the hole in my heart, so I have that against me as well. I think at the very beginning, I had a wonderful PH doctor. My team is what really got me through everything. But then again, that's well and good, but you also have to have that family support as well. Great, the treatment is helping you and everything, but you really need that mindset of having the support of your family to be there. Everything kind of fell into place when I was diagnosed. I want to think that I was one of the lucky ones. I didn't have to go through years and years and years of doctors. I was a special case, because of my open heart surgery at such a young age, on top of having the pulmonary hypertension. My cardiologist at the time, was also a pediatric cardiologist, and that kind of helped. Whenever I went in for any kind of test, they always had to work with my body and my issues. It wasn't like the same thing that they would do with somebody else. I want to think that it was all to do with the doctor I had at the very beginning. I am divorced. I'm pretty lucky that I'm able to still take care of myself. I'm a mother that I tell my kids everything. I don't want to keep it secret, because I want them to know that if anything ever happened to me that I can't speak for myself, I want them to know what I would want. So I know there are some other people out there that are like, "My family has no idea what I'm going through." I tell my kids pretty much everything. They've gone to doctor's appointments with me. They've been there when I've been in the hospital, and that has been wonderful. Right now since I'm in Florida, I have two of my daughters that live very close. That's been really helpful. But I'm not driving now too, so that's been a challenge in itself. But moving to Florida, my health has gotten so much better. My sister and I live together now. My lifestyle is much better because I do feel better. I think this was a great move for me health wise. I've lost weight finally after a year and a half. I have a great team. That's been probably the hardest part, moving. I look back at several years ago and how my health was at that time, which was not very good, and how much it is today. It's really has improved. I'm really thankful for that. I think that's a lot to do with your mindset and the team and fighting for what you need. It's definitely a journey I don't wish on anybody. The one thing that I always tell people that are newly diagnosed, because I've been on several sites on Facebook, is everybody is different. What's going to work for me might not work for you, but getting the right doctors is the best thing. But my biggest thing that I tell people is, everybody is different. You need to get that treatment right away. It's not a wait and see type of disease. It's not going to go away on its own. You need to get that right treatment. You have to be your own advocate. You have to be out there and ask questions. There's no right and wrong answer, but you need to know, because you only have this body once. You need to figure out how it's going to affect your everyday life. I had some great mentors when I first got PH, on Facebook, that are no longer here, so I try to remember what they told me to tell other people. I was born sick and I had to overcome a lot of stuff when I was little. I think that has gone on to me as an adult that is sick. I'm on oxygen now 24/7. I will always be on oxygen, so I try to be an advocate for getting the right type of oxygen I need. I don't know what would've happened if I didn't have the hole in my heart when I was little and all of a sudden, I'm 52 years old and I've got this life-threatening disease. I don't know if things would be different. It's still a shock, but I've always had people telling me, especially when I was younger, they were cruel to me at school, telling me I was going to die when I was 13. You live through that and you're like, "Okay, well, I'm 14 and I'm still here." I have more appreciation for my mother as I'm older, because I can't even imagine what she went through in the 1950s, taking me on the bus to go to the hospital and all that stuff. I can't even imagine that. What brought me here was my grandson. He lives across the street. That's my motivation to be well enough to see him grow up. That's me doing what needs to be done to keep me well. If it means staying in a lot more to stay healthy, then I'll do that. That's my motivation and just to be in spite of everybody that said, you can't do something. Just moving from Ohio to here was a trip and a half, having a friend of ours that had a horse trailer that moved all of our stuff here. Of course, I had to fly because I couldn't do the long trip. I still think we've been here two years and I'm like, "Did we really do this?" A couple years ago, I probably wouldn't have. But it's one of those that you wake up and you're like, "I'm ready. It's time." Where I used to live in Ohio, it was kind of an independent living senior place. Out of all those people, there was one lady in there that had PH at that time. I'm like, "I can't believe that I lived with somebody in this building that has the same thing that I do." She was on oxygen as well. Well, she ended up passing away. She was older than I was. One thing I would like to tell the people that are newly diagnosed, the best thing is to get into a support group. That really helped me, being around other people that have the same disease. I went for many, many years, took my mom with me. She enjoyed it. Learned a lot about pulmonary hypertension. I have not been able to find one here in Florida, so that's going to be on my bucket list for this year is to find a support group near me, or at least someplace I can get to. My name is Joellen Brown, 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: [email protected]

Listen and View more on the official phaware™ podcast site

#pulmonary hypertension #phaware #rare disease #lung disease #clinical trials #podcast #PH #asthma