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Emotions Resurface When A Loved One Receives An IPF Diagnosis
Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, I've learned to manage my emotions about my illness. However, there are a few circumstances that make it nearly impossible for me to control how I feel, often causing me to erupt with rage and anger.
One of those circumstances is when someone I love is diagnosed with IPF.
On one hand, it irritates me that the National Organization for Rare Disorders classifies IPF as a rare disease. A condition is considered rare if it affects fewer than 1 in 2,000 people. IPF certainly feels more prevalent in my world, especially when a loved one is diagnosed.
In the early days of my diagnosis, I didn't know anyone with a life-threatening lung disease. But the more I shared about my condition, the more people would tell me about someone they knew who struggled with similar symptoms, such as breathlessness, dry cough, and fatigue. That reinforces my sense that IPF isn't as rare as people think.
On the other hand, my heart hurts when someone I love is diagnosed with this condition. Not only does it threaten their life, but it can also make even the simplest daily tasks difficult. I feel emotional because this person's life will be forever changed, just as mine was eight years ago.
I was initially naive about what it meant to have a fatal lung disease. That was partly because the pulmonologist who diagnosed me acknowledged that he didn't know how IPF would progress in a 20-something young adult. It wasn't until I landed in the intensive care unit (ICU) with a respiratory virus that I realized how serious IPF was.
Following that experience, I was plagued with numerous emotions that took me years to work through. Following are the ones that resurface for me whenever a loved one receives an IPF diagnosis:
GriefMany people associate grief with death, but it can show up for many other reasons. Before my diagnosis, I was active in sports and enjoyed a full social life, but once I was no longer able to keep up with my peers, I lost the camaraderie of being part of a team.
That loss hit me hard. With professional support, I realized I was grieving the abilities I had before I got sick. When someone I love is diagnosed with IPF, I wonder which parts of their life they'll grieve, as this disease will inevitably steal things from them.
AngerFor months after my ICU stay, I wrestled with the question, "Why me?" I was so angry to be diagnosed with IPF, despite having no familial history of lung disease.
While no one could answer that question, unfortunately, those closest to me had to bear witness to my anger. It took me a long time to accept that I couldn't control this illness, but I could control how I responded to it and lived my life.
ConfusionMyriad appointments, tests, medications, and specialists follow a rare disease diagnosis, and the quantity of visits and information can be overwhelming and confusing. The best advice I received following my diagnosis was to have someone with me during appointments to be a second set of ears and help decipher everything that was said.
SadnessI went through a phase of deep sadness, possibly depression, following my diagnosis, and again when it finally sunk in how debilitating IPF was. I worry about those who are newly diagnosed and hope they have a strong support system to help them navigate the emotions that can accompany this kind of news. Without that support system, I'm not sure I would've made it out of my sadness.
How do you navigate your emotions when someone you love is diagnosed with IPF? Please share in the comments below.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
PFF Program To Aid People With New Pulmonary Fibrosis Diagnosis
The Pulmonary Fibrosis Foundation (PFF) has launched "PF Basics: Info for Newly Diagnosed Patients," a new educational program to help patients with pulmonary fibrosis (PF) and interstitial lung disease get answers to the most pressing questions about their disease after a recent diagnosis.
"We heard from patients and caregivers that a guided approach could make a significant impact for those newly diagnosed with PF or ILD," Scott Staszak, PFF's president and CEO, said in a press release. "Our new PF Basics program connects patients and their families with the essential information they need at the start of their journey and reminds them that they are not alone."
In PF, the lungs become scarred, causing shortness of breath, dry cough, and other symptoms. The disease is part of a larger group of respiratory conditions known as interstitial lung diseases that are marked by lung scarring, inflammation, or both. Because PF symptoms aren't specific to the disease, diagnosing it accurately may be difficult, and involves a number of tests and visits to medical specialists before a treatment is initiated.
Living with the disease may also be challenging for patients and their families. Learning to handle lifestyle changes, manage loss of breath, and address emotional issues may help patients better navigate their daily activities and maintain or improve their quality of life.
Learning about the new diagnosisThe foundation is encouraging newly diagnosed patients to explore the program, which is made up of six online modules patients can review at their own pace and according to their interests. The program was created as part of a collaboration between the foundation's medical team and the patient community to integrate medical expertise and real-world experience so recently diagnosed patients and families would have some needed guidance and support about this new phase of care.
The modules cover key questions and fundamental information about the disease, along with treatment options, medical care, support resources, important aspects of living with the disease, and the latest research and clinical trials.
The information is displayed as interactive text and informational videos. The modules also include patient stories and links that direct people interested in learning more about a particular subject to more in-depth information on the foundation's website. The program has a suggested order for completing it, but patients can skip modules to reach the topic that interests them most.
"We invite you to explore this information in the way that works best for you," the foundation states on the educational program's webpage.
ILD, Pulmonary Sarcoidosis Burden Rose Significantly From 1990 To 2021
The increase in the global burden of interstitial lung disease (ILD) and pulmonary sarcoidosis had the greatest impact on countries with a high sociodemographic index.
The global burden of interstitial lung disease (ILD) and pulmonary sarcoidosis increased by 169% from 1990 to 2021, with the greatest impact observed in high sociodemographic index (SDI) countries, according to a study published in BMC Public Health.1
Characterized by varying degrees of inflammation or fibrosis, there are about 200 types of ILDs, with idiopathic pulmonary fibrosis being the most common. Patients with certain ILD types face a poor prognosis, with untreated survival typically ranging from 3 to 5 years post diagnosis.
In contrast, pulmonary sarcoidosis is a granulomatous lung disease of unknown origin that can lead to respiratory failure. Its progression is unpredictable, and treatment outcomes are often unsatisfactory.
Globally, respiratory diseases account for about one-third of the workload in primary health care facilities, contributing to the increasing burden of non-communicable diseases. The Global Alliance Against Chronic Respiratory Diseases aims to reduce this burden by addressing conditions like ILD and pulmonary sarcoidosis.
Given the prolonged disease course and poor prognosis associated with ILD and pulmonary sarcoidosis, the researchers emphasized the need to analyze trends in their global burden and correlations with social development. To address this, they conducted a comprehensive analysis of the Global Burden of Diseases Study (GBD) 2021, which assessed burden trends and examined SDI-related health inequalities from 1990 to 20212; the GBD 2021 data set included data on disability-adjusted life-years (DALYs) across 371 diseases and injuries.
The increase in the global burden of interstitial lung disease (ILD) and pulmonary sarcoidosis had the greatest impact on countries with a high socio-demographic index (SDI).Image Credit: flashmovie - stock.Adobe.Com
The researchers extracted DALY data for ILD and pulmonary sarcoidosis from 1990 to 2021, stratified by age, sex, year, location, and SDI.1 Data were obtained from 5 SDI quintiles (high, high-middle, middle, low-middle, and low), 21 GBD regions, and 204 countries/territories, across 20 age groups ranging from 5 or younger to 95 or older. DALYs were calculated by summing years lived with disability and years of life lost.
The SDI, a composite indicator of development status, combines per capita income, average education level, and fertility rates among females younger than 25. In this study, the SDI represented the development level of each country. Additionally, the researchers performed a decomposition analysis to explore DALY changes from 1990 to 2021, attributing observed differences to population size, epidemiological change, and population structure.
Health inequalities were assessed using the slope index of inequality (SII) and concentration index, representing the degree of absolute and relative inequalities, respectively. Using an appropriate regression model, the SII represented DALY differences between the countries with the highest SDI and those with the lowest SDI.
Conversely, the concentration index, a relative measure of inequality and positive values, indicated a concentration of DALYs among countries with high SDI. The researchers noted that greater absolute values of both the SII and concentration index indicate higher levels of inequality.
As measured in DALYs, the total burden of ILDs and pulmonary sarcoidosis was estimated at 4,042,150 (95% CI, 3,489,795-4,516,883) in 2021, an increase of 169.3% (95% uncertainty interval [UI], 134.8-218.2) from 1990. Therefore, the age-standardized DALY rate increased from 37.1 (95% UI, 30.6-45.4) per 100,000 in 1990 to 47.6 (95% UI, 41.3-53.2) in 2021.
Also, the researchers noted that males and those aged 70 to 74 experienced a higher burden of ILDs and pulmonary sarcoidosis; the DALY rates increased progressively with age. In particular, the high-SDI quintile showed the greatest increase in the age-standardized DALY rate from 1990 to 2021 (53.4%; 95% UI, 45.1-62.2).
Of the 21 GBD regions, South Asia (1,312,644; 95% UI, 890,806-1,740,639), high-income North America (582,575; 95% UI, 532,853-621,775), and Western Europe (526,090; 95% UI, 478,286-559,276) were most heavily affected in 2021. At the national level, India (1,124,248; 95% UI, 750,835-1,523,499), the US (524,808; 95% UI, 478,755-560,667), and Japan (383,903; 95% UI, 335,660-419,248) were the countries with the highest DALYs in 2021. However, the highest age-standardized DALY rate was observed in Peru (246.2 per 100,000; 95% UI, 178.3-317.8), while the lowest was in the Philippines (2.1 per 100,000; 95% UI, 1.5-2.6).
According to the decomposition analysis, there was a notable increase in ILDs and pulmonary sarcoidosis DALYs across the 5 SDI quintiles, with the largest increase observed in the high-SDI quintile. DALY increases due to population growth were most pronounced in the low-SDI (95.8%) and low-middle-SDI (51.3%) quintiles.
Based on the SII, the disparity in DALY rates between countries with the highest SDI vs those with the lowest SDI increased significantly, from 19.6 (95% CI, 11.6-27.5) in 1990 to 53.4 (95% CI, 39.7-67.1) in 2021. Therefore, countries with higher SDI experienced a higher burden of ILDs and pulmonary sarcoidosis. Lastly, the concentration index indicated relative inequality rose from 0.15 (95% CI, 0.08-0.21) in 1990 to 0.24 (95% CI, 0.16-0.32) in 2021.
The researchers acknowledged their limitations, one being that low-income countries lack accurate diagnostic tools and complete disease registries. Consequently, they may have underestimated the burden of ILDs and pulmonary sarcoidosis in low-income countries. Despite their limitations, the researchers expressed confidence in their findings, using them to suggest areas for further research.
"Future work should focus on obtaining more accurate and available epidemiological data on ILDs and pulmonary sarcoidosis, especially in low-income regions and countries," the authors concluded. "The economic burden of ILDs and pulmonary sarcoidosis should also be further studied."
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