aimofcontact:[<p>When cystic fibrosis came up as a possible topic, we reached out to a teammate's friend Max in the hopes of getting insights into the needs of CF patients and current treatments to verify the need for further treatment options.
aimofcontact:[<p>When cystic fibrosis came up as a possible topic, we reached out to a teammate's friend Max in the hopes of getting insights into the needs of CF patients and current treatments to verify the need for further treatment options.
Since he was much more enthusiastic and open for discussion than we dared to hope, we extended our exchanges into the realms of the reality of life for CF patients, possible progressions, organizations and doctors in our area and his personal perspectives and values.
Since he was much more enthusiastic and open for discussion than we dared to hope, we extended our exchanges into the realms of the reality of life for CF patients, possible progressions, organizations and doctors in our area and his personal perspectives and values.
The interest in meeting him grew in the whole team and we invited him to one of our meetings. </p>],
The interest in meeting him grew in the whole team and we invited him to one of our meetings. </p>],
insights:[<><p>His honest and open answers to us, mostly nothing more than strangers to him, were touching and let the seriousness of cystic fibrosis set in. Learning about the challenges he faced felt heavy, besides him being relatively healthy and having a good life quality as a CF patient.
insights:[<><p>His honest and open answers to us, mostly nothing more than strangers to him, were touching and let the seriousness of cystic fibrosis set in.
Learning about the challenges he faced felt heavy, besides him being in relatively good health and having a good life quality for a CF patient.
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<p>Additional to the interpersonal effects of our discussion, Max gave us the reasons to continue with gene therapy approach while focusing on the lung:
<p>Additional to the interpersonal effects of our discussion, Max gave us the reasons to continue with gene therapy approach while focusing on the lung:
Modulators do not erase all symptoms
Modulators do not erase all symptoms.
There is a keen interest for new treatments in the CF community
There is a keen interest for new treatments in the CF community.
The lung function is most affected for most patients
The the decreasing lung functionality it the most limiting.
The immense impact of treatments on the life quality </p>
The immense impact of treatments on the life quality.</p>
<p>We learned a lot of new things that we did not consider before about cystic fibrosis such as:
<p>We learned a lot of new things that we did not consider before about cystic fibrosis such as:
The need for a calorie rich diet and digestive problems
The need for a calorie rich diet and digestive problems.
The frequency of checkups needed
The frequency of checkups needed.
How vastly different the progressions can be
How vastly different the progressions can be.
The increased need for hygiene
The increased need for hygiene to prevent infections.
The high price of medicines and induvial therapeutics </p>
The high price of medicines and induvial therapeutics.</p>
<p>Afterwards, we reflected on the discussion and asked our team members what stuck with them:
<p>Afterwards, we reflected on the discussion and asked our team members what stuck with them:
“How much attention has to be paid to everything in everyday life, I hadn't even thought about problems at the hairdresser.”
“How much attention has to be paid to everything in everyday life, I hadn't even thought about problems at the hairdresser.”
“Simply that he was there and reported everything in such detail. From minute 1, I had permanent goosebumps because I was so moved by this story. I think it's great how he stands his ground in life, does what he wants to do and what defines him as a person. It didn't seem as if his life was determined by CF. I somehow expected it to be different, even if that sounds a bit silly.”
“Simply that he was there and reported everything in such detail. From minute 1, I had permanent goosebumps because I was so moved by this story. I think it's great how he stands his ground in life, does what he wants to do and what defines him as a person. It didn't seem as if his life was determined by CF. I somehow expected it to be different, even if that sounds a bit silly.”
