heading:"Gathering valuable insights from the patient’s perspective",
interviewtabid:"maxfirst",
cardtext:"",
quoteNachname:"Mundt",
quoteVorname:"Philip",
language:"de",
quote:"",
quote:"The statement that left the biggest impression for me was when Max was telling about a friend of his and fellow cystic fibrosis patient who caught a fungi infection which he now cannot get rid of anymore, showing how fast a seemingly little infection can change the life of a cystic fibrosis patient for the worse without any kind of warning.",
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.
The interest in meeting him grew in the whole team and we invited him to one of our meetings. </p>],
Would it be thrilling to create or benefit patients? </p>
<p>Due to this, Max had a profound influence on our project from the beginning and is the main reason why we chose Integrated Human Practices and Safety & Security as our special prizes. Only after this discussion did we decide on targeting the lung instead of the pancreas and discarded the idea of a diagnostic approach. He did not only give us important information but most importantly personal investment into our project. </p></>],
pictureurl_implementation:"",
interview:<><QaBoxq="How and when were you first diagnosed? "a="When I was about one year old. My mother did not do any screenings or prenatal testing. I was in pain but as an infant you cannot say that, so I screamed a lot. Many doctors shrug that off in small children but after some time a sweat test was done at the children's clinic."/>
<QaBoxq="What do you think about diagnosing via sweat tests?"a="I am a clear opponent of diagnosing via sweat tests, especially if it is used to rule out CF and people have atypical CF, because of which they do not get diagnosed because of that."/>
<QaBoxq="What symptoms do you have?"a="Before taking modulators, I was underweight and did not feel hunger. I also had no sense of taste. Now, I have a healthy weight and still have respiratory symptoms such as very sticky mucus and digestive issues."/>
<QaBoxq="You are taking individual meds, correct? They are individual in respect to the mutation, not the person, right?"a="Yes, and yes, I am. "/>
<QaBoxq="What other medications are you taking? "a="Nasal spray, pancreatic enzymes, saline solution for inhalation and pantoprazole, used to reduce stomach acid production. "/>
<QaBoxq="Do you know how exactly they work?"a="Yes, I wrote a report on that during school. In the children's clinic they explained it like this: The CFTR channel is like a door and people with CF don’t have that many doors and some of the doors are broken. The medication makes more doors that function."/>
<QaBoxq="What changed when you started taking the modulators? "a="Everything. Most of symptoms are minor now and I have a better lung function and quality of life. I even grew taller."/>
<QaBoxq="Did you formerly take other medication?"a="I don’t remember anything like that, but I also always had good medical care. "/>
<QaBoxq="Do you experience any side effects from your medications?"a="At first yes, a lot. Stomach cramps and difficulty breathing for example."/>
<QaBoxq="Is diabetes a concern of yours?"a="Yes, it is common. I have to go to a diabetes checkup once a year. That happens together with all the other checkups like sonographies."/>
<QaBoxq="Do you know fellow patients that took part in clinical study for gene therapy or at least thought about doing so?"a="I know no one that took part in one but definitely people who would like to do so."/>
<QaBoxq="Do you know other patients that would want to use gene therapy?"a="Yes, most definitely."/>
<QaBoxq="Since your sweat is different, do you have trouble with your temperature regulation?"a="No and I do not know any patients with an issue like that. But it still is uncomfortable in the summer, because the sweat is thick, and it can smell stronger, too."/>
<QaBoxq="How many hours a day are devoted to your illness?"a="Good question, but wrong patient. I am blessed with good health while other people my age may have to be on a ventilator. I currently only have to inhale for 20 minutes every day, take my medication and be conscious about hygiene. I would say 30 minutes a day. "/>
<QaBoxq="That means you do not have many limitations due to CF, is that right?"a="Yes. There are many things I am concerned about but often there is not a different way."/>
<QaBoxq="What are some of the limitations you do have?"a="Of course, I am still concerned about my health and using public bathrooms for example. And I still do not go swimming in lakes and things like that. But all in all, I feel like I can live a very normal life. "/>
<QaBoxq="One concern is hygiene. Our university for example does not have toilet seats in most bathrooms. Do you think there should be?"a="That does not concern healthy people, who are the majority. But specifically for CF-people? No, there are too few at the university. It would be more hygienic overall, though. A “CF-toilet” would be nice as a form of a disabled bathroom."/>
<QaBoxq="How was your childhood as a sick child and how did your parents act with you? "a="My mother is active in the Muko e.V. and has been for some time. My parents always lead by example about what to do and not to do and dealt with it in a good way. My mother was always very committed and involved in giving me good care. I always knew about my illness but felt it was not that bad, because I received good care and education about my illness."/>
<QaBoxq="What is a typical age for a diagnosis in your experience?"a="Somewhere between the pregnancy and one year. It is obvious if the children do not gain weight and there are genetic screenings one can do prenatally or after birth. "/>
<QaBoxq="If a diagnosis is possible during pregnancy, do you know of any treatments during pregnancy?"a="No, I think the youngest age for modulators is 3 years. But people can do genetic testing and counselling before pregnancy."/>
<QaBoxq="What does a high-fat diet entail?"a="For me, it was a lot of oil and butter and high-calory drinks. "/>
<QaBoxq="What would happen if you stopped taking your medications?"a="The first thing to happen would be heavy and dry coughing, because the mucus would not be removed properly anymore. Thus, bacteria would not be properly removed from the lungs anymore either and an infection would become more likely. And I would not be able to really process food anymore, so no nutrients, feeling weak and stomach problems. "/>
<QaBoxq="Physical therapy is a part of your treatment – what exactly do you do there? "a="Breathing exercises and training my lung volume to keep it on the same level. "/>
<QaBoxq="Do you have further wished for your therapy?"a="Not really. I am very lucky and am free of heavy symptoms on most days. "/>
<QaBoxq="Is that the norm or do you know people who do want new therapies?"a="No, there is a need for new therapies. "/>
<QaBoxq="Are these people with different mutations or worse health? "a="I don’t know, the progression is so individual, and infections can create big changes. "/>
<QaBoxq="A therapy for which organ would benefit most people that have worse health than you do?"a="Probably the lung. The pancreas is important too, but stomach problems are usually less pressing than difficulty in breathing."/>
<QaBoxq="You mentioned that doing sport is difficult with CF, why?"a="Hygiene. In the lockers and the showers but also with the equipment."/>
<QaBoxq="Do you feel restricted in your free time activities?"a="No, I always had good alternatives. For example, going swimming at an open-air swimming pool instead of a lake. "/>
<QaBoxq="Would you have more freedom when you are better protected from Pseudomonas spcc. and other potential infections? "a="text"/>
<QaBoxq="text"a="Definitely. That is a big increase in the quality of life and that is a win. It also changes the picture people have of the illness. Of course being protected by prevention is good already but effective therapies for infections increase the sense of freedom even more. "/>
<QaBoxq="You said you are afraid every time you must go for a swab, why is that? "a="I am afraid of getting an infection. That still could be a death sentence. "/>
<QaBoxq="Are rooms with air conditioning a problem due to the possible germs in the air conditioners? "a="No, there is usually enough movement. But humidifiers are bad because of the pond water. "/>
<QaBoxq="You mentioned going to the hairdresser is problematic. Could you elaborate? "a="There are many possible sources of ponding water and with that, infections. That and the hygiene aspect in general. I am visited by my hairdresser, and he only uses a specific spray bottle to wet my hair that I keep and dry thoroughly between uses."/>
<QaBoxq="Are you the first person in your family that has CF? "a="Yes. But I suspect my father has a light or atypical form because he has suspicious mucus."/>
<QaBoxq="With life expectancies looking better, do many patients want to have biological children?"a="Not all but some. I think some would be interested in a therapy that can be done on the fertilized egg to have a healthy child. "/>
<QaBoxq="Do you know the film “Five feet apart”? If so, what do think about it, is it accurate? "a="Yes. It does not paint a wrong picture; their progression is possible."/>
<QaBoxq="Do you think there has to be more effort concerning diagnostics?"a="Early diagnosis is covered by the screenings."/>
<QaBoxq="Since you almost had to sue for your medication, do you know if there are any lawyers specializing in cases like this? "a="No, I don’t. "/>
<QaBoxq="Are most of the other patients you know in good health like you?"a="No. Another boy my age got a fungal infection and does not have long time left to live. "/>
