“Time matters” is a PHA Europe web campaign designed to raise awareness about the importance of TIME in PH: time to diagnosis, time to treatment, etc… It collects photos and posts from patients and family members in Europe and around the world. The website, which was originally set up in English, is available in 14 other languages. The campaign will be relaunched with new features in 2015.
The fact that time matters to PH patients has been a long-running theme within our organization.
Time Matters 2012
The initial Time Matters project was launched in 2012 in order to raise awareness of the importance of the time element in the diagnosis and treament of patients with PH. Patients, caregivers and HCPs were invited to share their hopes for the future and give their advice to other people whose lives were affected by PH.
Over the past years over 150 people from 30 countries shared their hopes and dreams with the community, making a great contribution to awareness of the condition. Read their stories.
Redesign and relaunch of Time matters
Over the past few years there have been significant developments in the treatment of PH: new drugs, new treatment strategies, including combination therapy, and improved surgery techniques, eg. lung transplant (LTX) and pulmonary endarterectomy (PEA). You can find more info about LTX and PEA in the relevant parts of this website.
Despite these progresses, the level of awareness of PH is still far from optimal, even among members of the medical profession, and it can still take up to 3 years for a correct diagnosis and initiation of treatment.
Now, PHA Europe is relaunching the #TimeMatters campaign among the PH community in order to encourage discussions and debate across the PH community in Europe, in particular through social media, on the different aspects of time, in order to address this gap and hopefully raise the profile of the disease further!
Gerry from Austria talks about his daughter
In 1998, after three years of travelling from one doctor to the next, we finally got the diagnosis ‘primary pulmonary hypertension‘ for our then three-year-old daughter. My first reaction was one of relief, at last knowing for sure what my wife had felt from the very beginning (mothers always know how their children are doing) […]
The Story of Beatriz and her mother Maria
Beatriz is 46 years old and, according her mother, “she was born without health”. Her mother is her caregiver. She used to take care of her daughter whenever the needed, and she is the pillar of her life.
Jelena from Serbia talks about PH
I think of PH all the time. I think about some banal things that other people don’t think about. For example, how far can I walk during the day, when I will stop, when I should rest.
Andjela from Serbia talks about PH
When I was diagnosed with PH, I often thought about the disease. I kept searching the Internet, I listened to various stories about it, asked for anything related to PH. I must admit, all the information effected me a lot.
The Story of Gilad Lauterbach and Pulmonary Hypertension
My name is Tami and I am married to Gilad. During the month of February 2016, Gilad was not feeling well and complaining of shortness of breath. We were referred for an ECG and an Echo examination. In the Echo the doctors were able to detect right heart failure caused by the high blood pressure […]
Paula, a PH patient from Portugal, shares her experience
Nobody knows what might happen from one day to another. But I feel like I had a gun to my head. The gun’s name was PH.
Yifat from Israel talks about her PH experience
The first symptoms for the illness appeared after the first year and a half of my marriage. We were a young couple living in a tiny apartment and all of a sudden I realized that as I walked from my bedroom to the kitchen I was exhausted!
Eva (Austria) talks about her PH experience
Well, the disease is called pulmonary hypertension, at least that is what the doctor at the Vienna General Hospital told me. I had realized that something was wrong with me for some time. First it was just little things like: “I have to take it slower today” or “I’m a bit out of breath.” “Maybe […]
Franziska (Austria) talks about her PH experience
I realized something was wrong with my health because I couldn’t talk at the same time as I was walking. I had extreme difficulty breathing.
Revital (Israel) talks about her PH experience
Two years ago, on a completely regular day at work, I started to feel dizzy followed by tingles in my legs and right palm.
Maria (Portugal) talks about her PH experience
What comes to mind when you hear «Time for people to realise that you are ill»? The first thing I think of, is that people don’t know what PH is. Furthermore, many symptoms are different from patient to patient. So our disease becomes anonymous…
Agostinho (Portugal) talks about his PH experience
What comes to mind when you hear “Time for people to realize that you are ill”? Diseases are always diseases. For me this disease was more difficult because it was unknown and it remains unknown for most people. For me it was like a punch in the stomach, as they say, because the first time […]
Dusanka (Serbia) talks about her PH experience
My name is Dusanka Radojcic. I’ve been suffering from pulmonary hypertension for a year. Before I found out that I actually suffer from this illness, I thought I was suffering from the ordinary hypertension.
Ivana (Serbia) talks about her PH sick mother
I often think that the situation is unfair for our PH patients. First of all, our doctors are not familiar with pulmonary hypertension. PH patients should be treated vigorously like any other disease, but the doctors don’t want to fight hard enough for PH patients.
Biljana (Serbia) talks about her PAH experience
My name is Biljana Kosanovic and I was born in 1971. I’m married and I’m the mother of two children aged 14 and 9. I was diagnosed with PH in April 2016. For the last 6 years, I’ve been struggling to find out the real cause of my condition, of my illness, of my constant […]
Andjela (Serbia) tells her PAH story
I often think about how my parents must feel. How they must deal with the fact that I have serious health problems. I was not able to accept my illness when I was first diagnosed. It was exactly two years ago and I was only seventeen years old when it all went wrong.