“I found that time gives a lot of hope. Time that you survived and not worsened.”

By Ralf Schmiedel, Pulmonale Hypertonie Selbsthilfe Germany, www.ph-info.de

“I found that time gives a lot of hope. Time that you survived and not worsened. At the beginning I set milestones and found that I felt comparably well with medication after one month, three months and so on. After being stable for one year, I thought: ‘Let’s make the next year the same. As a chronic optimist, I was getting more and more confident that I could keep up with the pulmonary arterial hypertension (PAH) by avoiding mistakes, adjusting life and using the upcoming new treatments, where I was a test pilot (like this more than a guinea pig). Well, I’m in year 24 after diagnosis, and things are getting harder, but there are new treatments on the horizon. We have to fight for survival until there is a new powerful option. So far [treatment] has worked. When I needed more, there was more treatment. This is why it is important that we patients also help speed up the translational process (from lab to patient) by joining clinical trials, not only for ourselves, but for our complete patient community. The quicker trials are enrolled, the quicker we get results and thus, hopefully, new treatments.”