diff --git a/src/data/hptimelinedata.tsx b/src/data/hptimelinedata.tsx index 3319ef34d62bc6859eebda43dc467c7a2ddbfef6..f36bb7a2ad4908a3935dc56ba0956f0190d8c655 100644 --- a/src/data/hptimelinedata.tsx +++ b/src/data/hptimelinedata.tsx @@ -485,20 +485,20 @@ export const timelinedata: Array<TimelineDatenpunkt> = [ </> }, { - vorname: "Jukia", + vorname: "Julia", nachnname: "XXX", job: "parent", - affiliation: "", + affiliation: "independent", pictureurl: pics['julia'], tag: "Patient", heading: "Interview with a CF Parent About Their Experience and Treatment Needs", interviewtabid: "julia", cardtext: "", language: "de", - quote: "", - aimofcontact: "", - insights: "", - implementation: "", + quote: "At first, our world fell apart. I still remember the conversation with the doctor. ", + aimofcontact: "We learned from our discussion with 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 EV, 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. ", + insights: "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, stressing the emotional strain that accompanies not only the illness itself but also the financial pressures. She also showed us more perspectives on parenting of children with CF, than we heard before, and told us about the way from the first diagnosis to growing accustomed to and living with a child with CF. Julia also confirmed that most children will have no issue using an inhalative therapy like we envision our gene therapy to be and shone light onto the comparatively very good situation for CF patients in Germany. ", + implementation: "This interview helped us confirm the delivery method we planned to use as we were previously concerned how and if children would be able to use the inhalative therapy. Besides that, Julia gave us further insights into the emotional side of dealing with CF and we were able to discuss the situation for patients in Germany in comparison to other countries better in later interviews [Link Joshua]. ", }, { vorname: "Joshua",