<QaBoxq="What do you think about support groups or health retreats for CF patients?"a="Support groups are extremely important. Although we are a good medical team, advice from peers often resonates more with patients. We’ve organized two parents' evenings recently, where parents can exchange experiences and support each other. Unfortunately, we can’t invite the children themselves due to the risk of infection, but in rehabilitation settings, they can meet in germ-specific groups and benefit from shared experiences."/>
<QaBoxq="Is there a risk of antibiotic resistance with repeated treatments?"a="Yes, resistance is a concern, especially with repeated antibiotic treatments. However, there’s often a discrepancy between what we see in lab tests and the clinical outcomes. Even if a germ shows resistance on paper, many patients still respond well to treatment. We base our decisions more on clinical outcomes than lab results, changing antibiotics only if the patient’s condition doesn’t improve."/>
<QaBoxq="Are there any side effects to the medications?"a="Yes, all medications have potential side effects, though many of them are minor, like rashes or stomachaches. One serious side effect of some antibiotics is hearing damage, which can lead to lifelong hearing loss. This is why we closely monitor patients in the hospital when starting treatments. The newer therapies, like modulators, can cause liver stress, so we regularly check liver enzymes in the blood. However, severe side effects are rare, and the drugs are generally well tolerated."/>
quote:"At first, our world fell apart. I still remember the conversation with the doctor. ",
aimofcontact:[<p>We learned from our discussion with Max [Link Max] that cystic fibrosis (CF) has a profound impact on the whole family – not just the patient. In order to gain further insight into this subject, we sought to engage with the next of kin of CF patients.
We were able to make contact with Julia through the self-help group of Mukviszidose e.V. [Link https://www.muko.info/ ], of which Max is a member. She subsequently reached out to us following Max's request for potential candidates for an interview with a patient group.
She and her husband have a six-year-old daughter carrying the F508del mutation in the CFTR gene and a toddler without CF. </p>]
She and her husband have a six-year-old daughter carrying the F508del mutation in the CFTR gene and a toddler without CF. </p>],
insights:[<p> The interview with Julia shifted our focus to a new group of stakeholders: The patient’s support systems. Most people do not get genetically tested before having children and due to that, many people could get in the position of having a loved one with CF.
We considered the societal impacts, such as the rising health care costs, which Nicole Friedlein emphasized during our interview. She explained how the long-term nature of treatment, frequent hospital visits, and the need for specialized medications place a significant
financial burden on both patients and the health care system. This insight shaped our understanding of the broader economic challenges faced by families and institutions involved in managing chronic illnesses. Meanwhile, Julia brought attention to the psychological impact,
