Understand the current discourse on LC-FAOD on social media.
More specifically:
We extracted around 500K search data points, 300 tweets and 700 Reddit posts within the geography of the US from July 2021 to June 2023, using curated keywords and hashtags.
Using unsupervised machine learning, our proprietary in-house AI clustered linguistically related inputs into concept clusters. Our team of analysts then interpreted these clusters, teasing out nuanced discourses on the topic.
The discourse were then sized through search - based on our curated keywords. Search data was obtained within a 2-year time period (March 2021 to February 2023).
Finally, from studying the discourses, we picked apart key themes and attitudes, combined data points with other relevant information surfaced during our research, and synthesized the findings into this report.
Daily Life Struggles
Patients with LC-FAOD experience daily life struggles, due to their physical limitations
Diagnosis Challenges And Inaccuracies
Diagnosis and screening of LC-FAOD are often inaccurate, and require retesting
Responsibility Of Parental Carriers
Parents caring for their kids face challenges in screening, treatment of FAOD, and feelings of guilt for passing it to their kids.
Support To Navigate Struggles
Patients living with FAOD experience emotional stress, fear and anxieties
Management With Dietary Restrictions
Patients are required to follow a low-fat, high- carbohydrate diet and consume frequent meals
Supplements And Alternative Treatments
Condition is managed through carnitine supplements, IV treatment or Liquigen
Exploring LC-FAOD Through Informative Videos
Healthcare professionals make use of video content to share information about LC-FAOD, including symptoms, treatment or dietary requirements.
Discovery And Advancement In Lc-Faod Therapies
Healthcare professionals share findings and studies of LC-FAOD treatment through publications and medical conferences
Insights Into Navigating Lc-Faod Complications
Healthcare professionals raise awareness through sharing complications of LC-FAOD such as cardiac complications or retinopathy.
Based on search interest, some of the greatest challenges faced by patients include “diagnosis inaccuracies” and “daily life struggles” since they make up 14% and 19% of searches respectively.
The usage of supplements is the most common method patients adopt to manage their conditions, as reflected by its high search interest compared to other discourse themes. Searches examples include “liquigen nutricia” and “carnitine supplement”.
Other challenges such as “emotional support” and dietary restrictions, despite their low volume, still shows modest growth. Which indicates a need for support for these patients, their loved ones and educate and guide them on their dietary needs.
Individuals with LC-FAOD may encounter difficulties when it comes to participating in physical activities, since the condition can result in muscle breakdown, soreness, and fatigue. Consequently, these limitations can have an impact on their social interactions and overall physical fitness.Furthermore, patients with LC-FAOD often face the challenge of finding a delicate balance between managing their health requirements and pursuing a sense of normalcy in their lives. The necessity to prioritize dietary restrictions, medication management, and self-care routines can sometimes disrupt their usual activities and routines, making it difficult to establish a sense of normalcy and fit in with their peers.
Patients with long-chain fatty acid oxidation disorder (FAOD) often encounter significant challenges in diagnosing their condition. One primary challenge is the potential delay in diagnosis, which can occur when newborn screening results for FAOD are borderline, requiring retesting. This waiting period can be distressing for parents as they anxiously await confirmation.
Additionally, false positive results further complicate the diagnosis, causing emotional turmoil as parents navigate retesting and endure the wait for confirmation.
Distrust may also arise due to possible laboratory errors, casting doubt on result accuracy and amplifying stress and confusion for parents.
Parents who are carriers of LC-FAOD face numerous challenges throughout different phases, starting from screening to the ongoing care of their affected child.
Couples planning to start a family may encounter expenses related to supportive services such as genetic counseling. Meanwhile, families who unknowingly pass on the condition to their children due to their carrier status may grapple with feelings of guilt and frustration.
Additionally, caring for children with FAOD demands significant effort from parents, encompassing various treatment and care aspects that can incur significant expenses for medical care and treatments.
Living with a chronic condition like FAOD can give rise to emotional stress, anxiety, and fear for both patients and their families. Dealing with the impact of the disorder, including its potential limitations and uncertainties, necessitates the presence of emotional support and access to resources such as counseling or support groups.
Simultaneously, acquiring relevant knowledge pertaining to the condition, its management, and potential complications is crucial. Understanding the underlying mechanisms of FAOD, dietary considerations, emergency plans, and the availability of resources empowers patients to actively engage in their own care and treatment.
One of the primary challenges faced by individuals with FAOD is the adherence to a strict dietary regimen. They are required to follow a low-fat, high-carbohydrate diet and consume frequent meals to prevent prolonged fasting periods that could potentially trigger metabolic crises. Complying with dietary restrictions and maintaining a balanced nutrition plan can be demanding, necessitating ongoing support and guidance.
Furthermore, many of these patients may rely on supplements to meet their nutritional needs, which can further contribute to the financial burden and stress they experience.
LC-FAOD can be effectively managed and treated through a variety of approaches. L-carnitine supplements play a crucial role in addressing fatigue by enhancing the body's retention of carnitine and its utilization for energy production and fat breakdown.
During emergency situations, such as when a child experiences vomiting or refuses to eat, prompt intervention through intravenous (IV) treatment becomes necessary.
Additionally, patients may also incorporate Liquigen into their treatment plan - which is a specialized food designed to support individuals with impaired fat absorption or metabolism of LCT, and in need of high MCT intake.
Healthcare professionals (HCPs) utilize the power of videos to explain LC-FAODs, including their symptoms, dietary requirements, and nutrition considerations.
They provide valuable insights into treatment options, emphasizing the importance of adhering to a suitable diet and the potential use of specialized formulas or supplements. HCPs also discuss how to manage sick days, offering practical advice to individuals with LC-FAODs and their caregivers. Additionally, HCPs address potential complications associated with LC-FAODs and provide guidance on when it is necessary to seek medical attention or go to the hospital.
Through their participation in video presentations, HCPs facilitate knowledge sharing, provide support, and foster a community that is dedicated to enhancing the understanding and management of LC-FAODs.
Recent research in the field of LC-FAODs has brought forth exciting novelties and promising advancements. Through various channels such as scientific publications, conferences, and online platforms, HCPs disseminate valuable insights and research outcomes that drive progress in the field of medicine.
HCPs share their findings, such as the recognition of ceramides as mediators of VLCADD-induced heart failure. This breakthrough discovery has led to the exploration of interventions targeting ceramide levels to prevent or mitigate heart failure in VLCADD patients. Research into personalized treatment methods for newborns with fatty acid oxidation disorders is also showcased.
Through their active sharing of findings, HCPs foster collaboration, inspire further research, and contribute to evidence-based practices.
Healthcare professionals (HCPs) address complications associated with Long-Chain Fatty Acid Oxidation Disorders (LC-FAODs), including cardiac complications in LCHADD and retinopathy.
Through informative videos, HCPs delve into the intricacies of LC-FAOD-associated cardiac complications, providing valuable insights into the underlying mechanisms, risk factors, and management strategies. They also shed light on retinopathy, a potential complication of LC-FAODs that affects the eyes, discussing the causes, symptoms, and available treatment options.
By sharing their expertise in these videos, HCPs aim to raise awareness, offer guidance, and empower individuals and caregivers to recognize and effectively manage these complications, ultimately improving the overall care and well-being of individuals living with LC-FAODs.
Mental / physical support
Patients encounter physical limitations such as muscle breakdown, soreness, and fatigue, hindering daily physical activities.
These limitations also hinder their social interactions, which can lead to a sense of isolation, causing increased stress and anxiety.
Parents also face a sense of guilt and frustration for passing on the condition to their children.
Medical diagnosis and services
Patients face challenges in diagnosing their condition, since inaccuracies are common, necessitating frequent retests. Additionally, false positive results further complicate the diagnosis, causing emotional turmoil for patients and their loved ones.
Guidance for dietary and nutrition needs
Dietary restrictions and nutrition supplements are common ways to manage this genetic condition. This can be challenging due to the need for strict adherence to dietary regimens. When children vomit or refuses to eat, different methods have to be adopted, which can be draining for patients and their loved ones.
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