Today, on World Pulmonary Hypertension Day, we are excited to announce the beginning of our Substack newsletter and updated web platform designed to help people living with chronic lung conditions live their best lives.
Being told you might have lung disease can be scary. Being told you have pulmonary hypertension (PH) based on an echocardiogram often leaves someone wondering and waiting for that first appointment with a specialist, searching for information to understand whatever you can about this new diagnosis. Being told you have interstitial lung disease (ILD) based on a chest x-ray or CT scan also leads a person to scour the internet while waiting to see the specialist to try and grasp the next steps. This Substack and our Live Learn Breathe website are designed to help you through this journey, from the time you first hear you might have a lung condition all the way to getting an accurate diagnosis and treatment plan focused on a whole patient approach (medications and lifestyle recommendations).
Every day in our clinics we see people at various stages of their lung disease, from those at the beginning of their journey to those who have been living with ILD, PH or other chronic lung disease for years. While there is a lot of great information out there through medical center websites or patient advocacy organizations, we saw a need to create a website to help guide people through all steps of their journey with their lung health. We created this website out of conversations that have every day with people in our clinics where we guide them through the diagnosis, setting goals, and ultimately in designing a treatment plan to help support them living their best lives with their lung condition.
When you check out our website, LiveLearnBreathe.org, you will see content centered on PH. Though our initial website build is focused on PH, we are designing the next stage that will bring a similar approach to understanding ILD and in the future other conditions as well. We are keen to build out this site and bring in perspectives and input from people living with PH, ILD, and lung disease. You’ll find a lot of information there, including printouts you can take to your medical appointment.
This Live Learn Breathe Substack is dedicated to bringing you topics on living with your lung condition. We will talk about topics like setting goals, how to prepare for your visit with your doctor, advocating for yourself (or your loved one if you’re here for someone you love), and techniques you can use to take care of yourself. We will discuss the latest clinical trials and medication breakthroughs and talk about the evidence and guidelines about how to use nutrition, exercise, sleep, community, and mental health, to help you feel the best you can feel.
We will have guest authors and interviews, bringing in patient perspectives to our Substack. This Substack and our website will be a living and breathing (see what we did there?) place to get information about your lung condition.
So, on this World PH Day, welcome to our Substack Community. Please share with friends and people you think might benefit from joining us.
Please note that because this is a public Substack it is for information purposes only, and is not to be taken as medical advice. It is best used when take information to your healthcare team and see how it may benefit you.
We look forward to walking with you on this journey.
In health and hope,
Patricia George MD and Joshua Solomon MD
PH and ILD Specialists
Creators, Live Learn Breathe
