Time really matters for patients with pulmonary hypertension!

What #TimeMatters is all about

Pulmonary hypertension (PH) is a severe condition which affects the lungs and heart. Patients may notice that they are short of breath, tired and dizzy as they try to carry out their normal daily activities. Please find more information here.

We have started the #TimeMatters project to raise awareness for the importance of the time element in the diagnosis and treatment of patients with PH. We want 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 hopefully raise the profile of the disease further!

The project will run from November/December 2016 to May/June 2016. There will be four dedicated time matters months in four different countries (Austria, Israel, Portugal, Serbia), each discussing a different topic around the issue of TIME. We will be writing about what the four participating associations are doing and do little reports of work in progress.

The first topic of the month was: The time it takes for people to realize you are ill.

The second topic of the month is: How much more time is needed for daily tasks when you have PH?

Tami

Tami talks about her husband’s every day struggle with PH. “We continue to hope for the best, and take each day as it comes!”

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Paula from Portugal

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.

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Yyifat from Israel

The first symptoms for the illness appeared after the first year and a half of my marriage. All of a sudden I realized that as I walked from my bedroom to the kitchen I was exhausted!

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Eva talks about her PH experience and the long process to accept the disease.

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Franziska has lived with the diagnosis for 16 years now and says that it is still possible to live a very good life.

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Revital from Israel

Two years ago, on a completely regular day at work, I started to feel dizzy followed by tingles in my legs and right palm.

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Agostinho from Portugal talks about his PH experience. For Agostinho the disease is very difficult because it was unknown and it remains unknown for most people.

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Maria talks about the difficulty to accept the fact that she has a chronic disease.

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Dusanka has been suffering from pulmonary hypertension for a year. First she thought she was suffering from the ordinary hypertension.

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Ivana’s mom has been suffering from PH for 5 years. Except for a few doctors, they do not have any other support.

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