From a9ca9215f7888300d70377130ee5e80755248a77 Mon Sep 17 00:00:00 2001
From: Kaya <kaya.lange@uni-bielefeld.de>
Date: Thu, 21 Nov 2024 18:57:02 +0100
Subject: [PATCH] olariu
---
src/data/hptimelinedata.tsx | 29 ++++++++---------------------
1 file changed, 8 insertions(+), 21 deletions(-)
diff --git a/src/data/hptimelinedata.tsx b/src/data/hptimelinedata.tsx
index d2acc026..7278b3f4 100644
--- a/src/data/hptimelinedata.tsx
+++ b/src/data/hptimelinedata.tsx
@@ -444,25 +444,14 @@ export const timelinedata: Array<TimelineDatenpunkt> = [
quoteVorname: "Dr. Cristian-Gabriel",
quote: "For most families, it’s a shock. Cystic Fibrosis still has a strong association with being a life-threatening disease, despite the fact that we now have good treatments, and many patients can live healthy lives. The diagnosis puts a huge psychological strain on the family, especially when dealing with very young children.",
aimofcontact: "To gain a deeper insight into the path to diagnosis, we invited pediatrician Dr. Cristian-Gabriel Olariu from the University Department of Pediatrics and Adolescent Medicine to share his experiences with CF patients with us. We interviewed him because of his expertise in the effects of diagnosis on the patient and the family members, but also on daily life. Additionally, we want to close the gap and create a bridge between academic research and clinical applications. Therefore, Dr. Olariu gave us insights about the clinical perspectives on CF patients.",
- insights: [<p>We invited Max, our CF patient contact, to join Dr. Olariu in discussing the intersection of academic research, clinical application, and patient needs. Through our connection with <a href="https://www.cfvww.org" >CF Vests Worldwide</a>, an organization dedicated to providing life-saving therapy vests to Cystic Fibrosis patients globally, we gained insights into the challenges faced by CF patients, particularly in regions like Thailand, where access to advanced treatments and medical devices is limited. The conversation highlighted the critical role of early diagnosis and intervention, as well as the quality-of-life challenges many patients endure due to conventional treatments that may not be effective for everyone. Innovative approaches, such as our SORT LNP (lipid nanoparticle) delivery system, present promising alternatives for CF therapy. This system, which allows for RNA encapsulation and administration via dry spray inhalation, could revolutionize treatment by targeting lung cells more effectively, particularly in resource-limited settings. Dr. Olariu underscored the need for psychological support and coordinated care for CF patients, emphasizing that novel therapies like LNP-based gene treatments have the potential to improve treatment efficacy and accessibility, ultimately reducing the lifelong burden of care for patients and their families. </p>,
- ,
- <p>We have considered the extent to which an early diagnosis is always an advantage, as some parents perceive an early diagnosis as an additional burden and would prefer to experience the first years of their child's life without constant medical intervention. Especially when there are cases in which patients only show a clear clinical picture at an advanced age. The psychological burden also lies with the children, who often experience medical trauma because they are involved in such intensive medical care from birth. Additionally, the treatment of Cystic Fibrosis is very expensive, and the costs are covered by health insurance companies to varying degrees. In some countries, such as the USA, Ukraine or Developing countries, many families cannot afford the necessary treatments. But Dr. Olariu also drew our attention to another problem in the treatment of Cystic Fibrosis. Infections, especially with bacteria such as Pseudomonas spcc., are difficult to treat and often lead to long hospital stays. Max, our patients’ representative, who knows Dr. Olariu through his treatment, shared his experience with Pseudomonas spcc infections, illustrating the reality of an invisible danger that determines a patient's everyday life. Strict hygiene measures are required to prevent infections, such as wearing face masks in hospital and careful handling of potential sources of infection. The clinics where Cystic Fibrosis patients are treated work closely with a multidisciplinary team of doctors, psychologists, physiotherapists and nutritionists to ensure that patients receive holistic care. </p>,
- <p>Pros of Early Diagnosis and Treatment</p>,
- <ol>
- <li>Timely Intervention: Prevents severe organ damage and improves long-term outcomes.</li>
- <li>Holistic Care: Involves a multidisciplinary team for comprehensive patient support.</li>
- <li>Access to Innovations: Allows patients to benefit from advancements like nanoparticle drug delivery.</li>
- <li>Family Support: Provides education and resources for effective management from the start.</li>
- </ol>,
-
- <p>Cons of Early Diagnosis and Treatment</p>,
- <ol>
- <li>Psychological Burden: May cause stress for parents and children due to constant medical interventions.</li>
- <li>Cost Implications: Treatments can be expensive, with varying insurance coverage, leaving many families unable to afford care.</li>
- <li>Infection Risks: Patients still face risks from infections like Pseudomonas spp., leading to potential hospitalizations.</li>
- <li>Over-medicalization: Continuous focus on treatment can overwhelm families, affecting the quality of early childhood experiences.</li>
- </ol>,
- ],
+ insights: [<div className="row">
+ <div className="col"><img src="https://static.igem.wiki/teams/5247/photos/hp/olario-abbildung1.svg"></img>
+ <img src="https://static.igem.wiki/teams/5247/photos/hp/proandcon-png.svg"></img>
+ </div>
+ <div className="col"><p>We invited Max, our CF patient contact, to join Dr. Olariu in discussing the intersection of academic research, clinical application, and patient needs. Through our connection with <a href="https://www.cfvww.org" >CF Vests Worldwide</a>, an organization dedicated to providing life-saving therapy vests to Cystic Fibrosis patients globally, we gained insights into the challenges faced by CF patients, particularly in regions like Thailand, where access to advanced treatments and medical devices is limited. The conversation highlighted the critical role of early diagnosis and intervention, as well as the quality-of-life challenges many patients endure due to conventional treatments that may not be effective for everyone. Innovative approaches, such as our SORT LNP (lipid nanoparticle) delivery system, present promising alternatives for CF therapy. This system, which allows for RNA encapsulation and administration via dry spray inhalation, could revolutionize treatment by targeting lung cells more effectively, particularly in resource-limited settings. Dr. Olariu underscored the need for psychological support and coordinated care for CF patients, emphasizing that novel therapies like LNP-based gene treatments have the potential to improve treatment efficacy and accessibility, ultimately reducing the lifelong burden of care for patients and their families. </p>,
+ <p>We have considered the extent to which an early diagnosis is always an advantage, as some parents perceive an early diagnosis as an additional burden and would prefer to experience the first years of their child's life without constant medical intervention. Especially when there are cases in which patients only show a clear clinical picture at an advanced age. The psychological burden also lies with the children, who often experience medical trauma because they are involved in such intensive medical care from birth. Additionally, the treatment of Cystic Fibrosis is very expensive, and the costs are covered by health insurance companies to varying degrees. In some countries, such as the USA, Ukraine or Developing countries, many families cannot afford the necessary treatments. But Dr. Olariu also drew our attention to another problem in the treatment of Cystic Fibrosis. Infections, especially with bacteria such as Pseudomonas spcc., are difficult to treat and often lead to long hospital stays. Max, our patients’ representative, who knows Dr. Olariu through his treatment, shared his experience with Pseudomonas spcc infections, illustrating the reality of an invisible danger that determines a patient's everyday life. Strict hygiene measures are required to prevent infections, such as wearing face masks in hospital and careful handling of potential sources of infection. The clinics where Cystic Fibrosis patients are treated work closely with a multidisciplinary team of doctors, psychologists, physiotherapists and nutritionists to ensure that patients receive holistic care. </p>,
+ </div>
+ </div>],
implementation: [<p>In summary, our project greatly benefited from the conversation with Dr. Olariu. His insights into the complexities of Cystic Fibrosis treatment, particularly the significance of early diagnosis, were invaluable and we considered early treatment methods. Max’s personal experiences added a human perspective, illustrating the medical and psychological challenges he faces, including infections with <i>Pseudomonas spp.</i> Dr. Olariu highlightend the importance of a multidisciplinary approach, involving not just medical professionals but also psychologists, physiotherapists, and nutritionists for holistic care. This discussion helped us appreciate the balance between timely interventions and the emotional burden on patients and their families, guiding us to develop a more empathetic understanding of living with Cystic Fibrosis.</p>],
interview: <>
<QaBox q="Could you please tell us about the journey that parents go through with their CF-sick children from the first visit to diagnosis and treatment?" a="Since 2016, Cystic Fibrosis (CF) diagnosis has been part of newborn screening. This means that we receive many children right after birth whose screening results were abnormal. These children are then sent to us for further clarification. Not every child with an abnormal screening result is sick, so we perform a sweat test, and about one-third of the children are diagnosed with the disease. The advantage of early diagnosis is that we can intervene and start treatment early to prevent organ damage. However, there are also rare mutations where the course of the disease is difficult to predict." />
@@ -483,8 +472,6 @@ export const timelinedata: Array<TimelineDatenpunkt> = [
<QaBox q="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." />
</>,
pictureurl_aim: "https://static.igem.wiki/teams/5247/photos/hp/interview-olariu.svg",
- pictureurl_interview: "https://static.igem.wiki/teams/5247/photos/hp/olario-abbildung1.svg",
- pictureurl_implementation: "https://static.igem.wiki/teams/5247/photos/hp/proandcon-png.svg",
summary: "We interviewed Dr. Cristian-Gabriel Olariu to gain insights into the diagnosis and treatment of Cystic Fibrosis (CF). He highlighted the importance of early diagnosis through newborn screening, which allows for timely intervention but can also be perceived as a burden by families, especially when symptoms may not manifest until later. Dr. Olariu emphasized the emotional and financial challenges families face, particularly regarding costly treatments and insurance variability. Patient contact Max shared his experiences with infections like Pseudomonas spp., which complicate care and necessitate a multidisciplinary approach involving medical professionals, psychologists, and nutritionists. Overall, the discussion underscored the need to balance medical interventions with the emotional well-being of patients and families, guiding us toward a more compassionate understanding of living with CF.",
months: "may"
},
--
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