Recently, we updated our old interview with musician Chloe Temtchine, in which she spoke about her Pulmonary Hypertension diagnosis and life after that. While Chloe continues to spread awareness with her songs, we would like to do our tiny bit for PHA awareness too.
That’s why we decided to do a small feature on the PHAware Global Association, a non-profit 501(c)3 organization that works solely to spread awareness about PH & also supports research. There are many organizations around the world that are working towards PH awareness. But this one is at the forefront and it was the least that we could do.
Without further ado, let’s dive in.
What is PH?
Pulmonary Hypertension, commonly known as PH is a progressive rare disease that causes blood pressure to build up in the lungs. In mild cases, it can cause coughing bouts and shortness of breath. But as the disease progresses, it can cause a cascade of problems that includes right-heart failure and even death.
This is caused because arteries in the lungs of patients start to stiffen or narrow with time. This starts to exert a lot of pressure on the right side of the heart. As a result, the heart now has to work extra hard even to push blood through those arteries. After a prolonged time span, the heart just gives up, which results in death.
PH can also lead to other conditions such as Occlusive Venous Thrombosis in the lungs along with pulmonary embolism.
Some PH Facts
Before we speak about the organization, let’s try and understand this condition a little more.
- PH can affect people of all ages. At this point in time, there seems to be no ethnic group or demographic that’s more likely to be affected though. However, research suggests that there are certain risk factors that can severely amplify your risk of contracting PH.
- PH is often diagnosed late. That’s because the symptoms of the condition can overlap with those of other closely related conditions like asthma & COPD. So, if you suspect that you have PH, speak to your healthcare professional about getting a diagnosis.
- Not all PH is the same type. There are 5 groups according to the WHO. Group 1 is Pulmonary Arterial Hypertension (PAH), which itself has different sub-types like Idiopathic PAH (IPAH) & Heritable PAH (HPAH). Group 2 is Pulmonary Hypertension Due to Left Heart Disease. Group 3 is Pulmonary Hypertension Due to Lung Disease. This again can either be obstructive or restrictive like COPD or emphysema. Group 4 is chronic thromboembolic pulmonary hypertension (CTEPH) which is caused due to Chronic Blood Clots in the Lungs. This is essentially caused due to a blood clot in the lung which is very difficult to dissolve. However, in some cases, pulmonary thromboendarterectomy (PTE) surgery may be possible. Lastly, group 5 is when PH is caused due to unknown causes. It can be triggered as a secondary condition to a wide range of other conditions such as some metabolic disorders, sickle cell anemia & splenectomy to name a few.
- While there was just one medication in the past to treat PH, now there are 14 medications that greatly improve the chances of slowing the progression of the disease. If applicable and possible, double lung transplants also increase the chances of a patient leading a healthy and fulfilling life.
Why create PH awareness?
PH is generally considered a rare disorder. But did you know that there are almost 500-1000 new cases of PAH every year in the United States alone? That’s not all. It is estimated that PH contributes to 18,000 adult deaths in the U.S. every year.
It can affect people of all ages. Even those with other related conditions such as left-heart disease, sleep apnea, congenital heart disease or chronic obstructive pulmonary disease (COPD).
For a condition that’s becoming increasingly commonplace, awareness is sparse. That’s why it is crucial to help create awareness, not merely about the condition, but also about risk factors and symptoms, useful resources, promising therapies, and even upcoming ones, which are at an early stage of research.
What is PHaware?
PHaware is a non-profit that was founded by a group of pulmonary hypertension awareness activists. It’s a group of patients, medical professionals, caregivers, and volunteers who work together to make the public, media, donors, charitable organizations, and potential investors aware of this condition.
Treatment for PH can sometimes last for years and requires constant medical attention, which can quickly escalate the costs. We have come across individuals who have been unable to fund the treatment by themselves and have constantly sought assistance, which is limited.
An organization like PHaware can play a critical role in helping such patients get assistance.
What is their mission?
PHAware works to create Global awareness about Pulmonary hypertension by engaging with various organizations and using innovative technologies that can help forge a new course towards a permanent cure.
What is their vision?
While it sounds a little far-fetched, the organization wants to help make Pulmonary Hypertension a thing of the past. Like Malaria is, in most parts of the world. Or Polio. Like HIV awareness is at the moment.
In the 1980s, if someone would have said that HIV awareness would be mainstream, people wouldn’t have believed. But it now has become commonplace, hasn’t it? That’s due to the relentless efforts of many organizations like these.
What is their approach?
PHaware is initiating much needed conversations amongst key stakeholders in the health space. This is helping increase PH awareness taking it to unprecedented levels. The very fact that PH is a rare condition that is rarely diagnosed in time, Phaware is using modern tools like social media software and in some cases hardware, to make information readily available, even to the general population.
As of now, information and awareness are limited even amongst the group that is primarily affected by this condition. Ph aware aims to bridge this gap. They are also working to develop mobile applications that help a patient connect better with their doctors. As of now, they have the phaware365 App on Ios and Android. These apps can also log symptoms and map the patient’s journey towards recovery. Logging the symptoms can provide doctors with real time information.
One of their primary objectives is to leverage cutting edge technology to help capture relevant data, engage stakeholders in conversations, and enable patients, both diagnosed and undiagnosed to have ready access to an extensive catalog of digital content that contains every tiny detail on PH.
Where can you contact them?
You can get in touch with them at
phaware global association
1227 N. Avon St.
Burbank, CA 91505