We never sell or share your email address. It's not lost on me that this is happening during the worst global health crisis in a century. Using Cystic Fibrosis as an example, Isobelle Moores discusses how developments in science other the years have impacted on the lives of many people with life changing conditions. The CFTR protein has also been found in . Despite the fact that there is currently no cure for cystic fibrosis, there are treatments that improve patients' quality of life and life expectancy. . I write primarily about living with cystic fibrosis, with bits about motherhood and day-to-day life sprinkled throughout. Treatment plans are . Approximately 1,000 new cases of CF are diagnosed each year. Although cystic fibrosis is progressive and requires daily care, people with CF are usually able to attend school and work. Estrogen worsens mucus dehydration in the lungs and impairs the immune system’s ability to clear common lung infections like Pseudomonas aeruginosa. People with CF have mucus that is too thick and sticky, which. Even as recently as the 1980s, few people with CF survived to adulthood. Why men with CF tend to survive longer than women is not fully understood. The book explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. As one reviewer said, this book “is the only complete answer book for ... CF pri­ marily affects the respiratory and digestive systems in children and young adults. More than 75 percent of people with CF are diagnosed by age 2. Pancreatic cysts comprise of fluids and are found in the pancreas. Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through its quality improvement programmes and research with the aim of extending life expectancy from 37 to 50 years by 2025. 2017;166(8):537-546. doi:10.7326/M16-0858, Keogh RH, Szczesniak R, Taylor-Robinson D, Bilton D. Up-to-date and projected estimates of survival for people with cystic fibrosis using baseline characteristics: a longitudinal study using UK patient registry data. Based on the 2018 Registry data, if your child with cystic fibrosis is born between 2014 and 2018, you can expect them to live at least till 44 years. Rayner O., Sedgwick P.M. 2020;15(1):690. doi:10.4081/mrm.2020.690. Lung transplantation can improve the chances of survival for people with end-stage disease. Publisher's description: In 2012 the WHO Regional Committee for Europe approved Health 2020 in two forms. In this article, we look at average life expectancies for people with CF based on their age and other factors. Life expectancy of babies born with CF when Ritchie was first diagnosed was predicted to be 31 years old, according to the Cystic Fibrosis Foundation, a non-profit organization advocating for CF health and care. The life expectancy of cystic fibrosis patients has been increasing over the past 40 years. February 17, 2020. Cystic Fibrosis Foundation. Continuing therapeutic advances are expected to further improve their quality of life and extend their lifespan. Cystic Fibrosis Foundation. With advances in treatment, people with CF now live healthier and longer lives than even just a few decades ago. These statistics reflect current life expectancy rates in developed countries, such as the U.S. and the United Kingdom. Cystic fibrosis increases susceptibility to lung infections. Most men with cystic fibrosis are infertile, but can conceive with assisted reproductive technology. This is the most common mutation, representing around 70% of mutations. Improvements in screening and treatments mean that people with CF now may live into their mid- to late 30s or 40s, and some are living into their 50s. In the 1940s, most babies born with CF died in infancy. They often have a better quality of life than people with CF had in previous decades. Some research suggests that this is due to the increased risk of death in women with CF-related diabetes. Mutations in CFTR, the gene encoding the epithelial ion channel that normally transports chloride and bicarbonate, lead to impaired mucus hydration and clearance. Cystic fibrosis is most common in people of European ancestry, and less common in those of Asian, African, or Hispanic ancestry. ECFS best practice guidelines: the 2018 revision It more accurately reflects the age that a person with CF can expect to reach. Women with cystic fibrosis can have children, but may have decreased fertility. Ⓒ 2021 About, Inc. (Dotdash) — All rights reserved, Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Cystic fibrosis (CF) is the most common autosomal recessive disease in the Caucasian population, occurring in approximately 1/3500 births. Found inside – Page 172Previously considered lethal in infancy and childhood (in 1938, life expectancy for the patients was only 6 months), cystic fibrosis currently attains median survivals of 50 years of age, mainly due to the early diagnosis, ... As per 2008 statistics, cystic fibrosis life expectancy was 37.4 years. Learn About Cystic Fibrosis Cystic fibrosis is a genetic (inherited) condition that leads to recurrent sinus and pulmonary infections, as well as gastrointestinal problems. About 30,000 people in the United States have cystic fibrosis. 2018;17(2):218-227. doi:10.1016/j.jcf.2017.11.019, Corriveau S, Sykes J, Stephenson AL. © 2004-2021 Healthline Media UK Ltd, Brighton, UK, a Red Ventures Company. 2020;583:S10-S11. Cystic fibrosis is a monogenic disease considered to affect at least 100 000 people worldwide. . Previous incorrect diagnoses include asthma, tuberculosis, and chronic bronchitis. Some other factors can play a role in life expectancy rates. 24/03/2020 - 9 minutes. Cystic fibrosis impairs fertility. For example, people with better lung function consistently rate their quality of life as being higher, compared with the ratings of people with poorer lung function. Several factors can influence a person’s quality of life and life expectancy. Cystic Fibrosis (CF) is a progressive genetic condition that mainly affects the lungs and the digestive system. If treatments continue to improve at their current pace, at least half the babies born with CF today will live into their 50s and 60s. The heart of the story explores the relationship between the two sisters—one devastatingly ill, the other healthy but burdened with guilt—as they journey through childhood, adolescence, and young adulthood. People with CF experience chronic lung infections and inflammation, which cause progressive damage to their lungs and shorten their lifespan. How an individual views their quality of life depends on a number of factors, including their age and general health status. This book provides a comprehensive overview of the multisystem disease, cystic fibrosis, for both pediatric and adult patients. However, Cystic Fibrosis Worldwide suggest that in developing countries, such as El Salvador and India, life expectancy for people with CF is under 15 years of age. Cystic fibrosis, one of the most common genetic diseases in Switzerland, causes severe respiratory and digestive disorders. [PMC . Current treatments for cystic fibrosis are not suitable for all patients and have a limited effect on this life-threatening disease. Cystic fibrosis is a prevalent condition that people can be carriers of without knowing. Clean eating: What does the research say? Looking after patients with CF is highly rewarding, allowing those of us to combine our dedication and problem-solving skills to create a personalized approach. This book is invaluable for those involved in the care of CF patients. However, other factors may have a greater influence on life expectancy, which is why some people with CF live into their 70s. 26% of survey respondents with CF aged 21 . However, Hispanics living in the United States have a lower median survival age than do people of European ancestry. In 2017, the registry found that: Thanks to advances in DNA testing, doctors are identifying more and more people with CF for the first time well into their 50s, 60s, and 70s. CFTR protein-targeting therapies, sometimes called modulators, help fix flaws in the CFTR protein. Paediatr Respir Rev 2020 May 26;S1526-0542(20)30081-6. doi: 10.1016/j.prrv.2020.05.002. Drug development pipeline. Cystic fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Living Life With Cystic Fibrosis. 2020;25(3):192-197. doi:10.5863/1551-6776-25.3.192, Jaques R, Shakeel A, Hoyle C. Novel therapeutic approaches for the management of cystic fibrosis. 2. Given the general interest in CFTR, this collection will appeal to a broad readership with interests in CFTR, cystic fibrosis, ion channels and ABC transporters. In 1962, the average life expectancy of a child with cystic fibrosis was just 10 years old. And also, I love you!) Cystic Fibrosis Foundation. It primarily affects the lungs and digestive system. Although there is no cure for CF, people with the condition are now living longer than ever. prevents proteins needed for digestion from . He discovered that people with CF, a progressive, genetic disease that causes thickened mucus to form in the lungs and other organs, rarely lived to age 25. However, over the past few decades, life expectancy for people with this condition has improved dramatically. Ann Intern Med. Stephenson AL, Sykes J, Stanojevic S, et al. Newer treatments, including inhaled antibiotics and other medications, have increased and will likely continue to increase life expectancy rates going forward. 1 However, due to a lifetime of CF complications and irreversible damage to the lungs and other organs, patients born in the 1990s have a much shorter life . This means that among those born with CF in the U.S. between 2013 and 2017, half are predicted to live to age 44 or more.1,2, A 2017 study looked at patient registry statistics in the U.S. and Canada, comparing 110 U.S. care centers with 42 Canadian centers, and found that those born in Canada tend to live 10 years longer. Why did you decide to focus on this? Despite this diversity, over 80% of people with CF carry the F508del mutation, and 40% carry two copies. Before the 1980s, about half of the people with CF did not live into their 20s. Using a transdiagnostic framework, this book describes how mental health professionals can diagnose and treat OCD and related disorder. Some people will live longer. Cystic fibrosis (CF) can affect a person’s quality of life and influence their life expectancy. Some mutations cause more severe symptoms than others, and some may be associated with earlier death. The improved chances of survival are due to advances in early diagnosis, supportive care, nutritional care, and infection control. Found inside – Page 3Dr. Harry Shwachman, a gastroenterologist at Boston Children's Hospital, was the first to introduce “physical therapy” into the CF treatment regimen. This “physiotherapy” was based on postural drainage and percussion that was practiced ... My timelines are on fire with the wonderful news out of the North American Cystic Fibrosis Conference that Median Predicted Survival in cystic fibrosis has been raised to 50 years old thanks to a hell of a lot of progress that our condition has made over the past several years. Some of you may remember when I used to blog on a different platform. He is an assistant clinical professor at the University of California, San Francisco School of Medicine and currently practices at Central Coast Allergy and Asthma in Salinas, California. Between the 1970s and 1990s, life expectancy gradually increased to age 31, thanks to still more treatments, including lung transplants and DNase. CFTR modulator therapies. All rights reserved. According to the 2017 Cystic Fibrosis Foundation Patient Registry Data, patients in the U.S. born between 2013 and 2017 can expect to live into their mid-40s. Cystic fibrosis occurs in one out of every 15,000 African-American births. Then, between 1993 and 2017, median life expectancy leapt to age 44. . Research seems to indicate that body weight, insurance coverage, ability to buy CFTR modulators, the latest group of CF drugs that improve the function of the CFTR protein, may have an impact on long-term survivorship.5,6. 2018;24(6):574-578. doi:10.1097/MCP.0000000000000520, Healey, N. The gender gap in cystic fibrosis. Cystic fibrosis year in review 2020: Section 2 pulmonary disease, infections, and inflammation. With 634 total respondents, made up of 404 patients and 230 caregivers, the second annual Cystic Fibrosis In America reveals that many people living with CF are hopeful and optimistic, yet the future is unknown. . Found inside – Page 57Cystic Fibrosis (CF) is a life-shortening, multiorgan autosomal recessive disease that affects approximately 75,000 ... in life, while developments in the treatment of CF manifestations Y. Kunitomo Yale University School of Medicine, ... Women with CF may also experience higher levels of lung inflammation. Despite considerable therapeutic advances, this disease still reduces life expectancy, in particular due to . Estrada-Veras J, Groninger H. Palliative care for patients with cystic fibrosis #265. 2013 marks the 50th anniversary of the Association. The European Cystic Fibrosis Society aims to achieve the best possible treatment and the highest quality of life for the patient with cystic fibrosis by the development and distribution of knowledge in the field of cystic fibrosis.. View for Free. The Patient Registry Annual Data Report publishes the median predicted survival age of people with CF based on their year of birth. Although there has been a considerable increase in life expectancy over recent years, the majority of deaths from cystic fibrosis still occur in adults aged under 65. Thank you, {{form.email}}, for signing up. In fact, babies born with CF today are expected to live into their mid-40s and beyond. October 8 2020. Found inside – Page 207Births, Life Expectancy, Deaths, and Selected Health Data Shana Hertz Hattis ... Infant deaths [under 1 year] per 100,000 live births in specified group. Infant deaths are based on race or ... 2 3 – * * * * Cystic fibrosis (E84) . Many people with CF develop health complications as they age. Currently, about half of people with cystic fibrosis will live past the age of 40. Some research has reported that people with CF find information on life expectancy to be useful. Cystic fibrosis (CF) is a progressive, genetic disease that affects roughly one in 5,000 people born in the United States. Cystic Fibrosis Life Expectancy: A Support Guide. Cystic fibrosis is an inherited illness that causes serious damage to the lungs, digestive system, and other organs in the body. A study in the United Kingdom found that women with a single copy had a median survival age of 51; men with a single copy had a median survival age of 57. 1 INTRODUCTION. What Symptoms Can You Expect With Cystic Fibrosis? 1,2. CF Ireland was established by a small dedicated group of parents in 1963 with the first meeting in Crumlin Children's Hospital. Men with CF have a median survival age that is two to six years greater than women with CF. So, there is a steady rate of improvement, which would have been impossible . The text details the scientific principles of respiratory medicine and its foundation in basic anatomy, physiology, pharmacology, pathology, and immunology to provide a rationale and scientific approach to the more specialised clinical ... According to the CFF’s Patient Registry, children with CF grow up to lead full, productive lives despite their disease. Moderate alcohol consumption ‘should not be recommended for health reasons’. For men and women with two copies who were 30 years or older, the median survival age rose to 52 and 49, respectively. Explains what cystic fibrosis is, how it is diagnosed and treated, and how it can affect a person's life. The Changing Epidemiology of Cystic Fibrosis: Incidence, . The book highlights important recent developments and discusses the next steps that will be required for further improvement of the life expectancy and quality of life of CF patients. Some of these can contribute to reduced quality of life and early death. This is information like you have never seen it before - keeping text to a minimum and using unique visuals that offer a blueprint of modern life - a map of beautiful colour illustrations that are tactile to hold and easy to flick through ... care, the average life expectancy has been steadily increasing and quality of life has improved. Other conditions, such as acute pancreatitis, can lead to fatal heart, lung, or kidney issues. The CFTR protein is located in every organ of the body that makes mucus, including the lungs, liver, pancreas, and intestines, as well as sweat glands.. Cystic fibrosis is a serious, life-threatening disease that significantly shortens a person’s lifespan. . Despite the possibility of these complications, some research suggests that the perception of quality of life improves as people with CF get older. All rights reserved. Now, the average life expectancy is in the 40 years. Health problems arising from cystic fibrosis, such as poor nutritional status, liver failure, and diabetes, can shorten a person’s lifespan. Goss CH. Ridley K, Condren M. Elexacaftor-tezacaftor-ivacaftor: the first triple-combination cystic fibrosis transmembrane conductance regulator modulating therapy. Find out about the diagnostic procedure and the…, In this article, we list some of the best foods for people with cystic fibrosis to eat to help boost their energy intake and nutrient status, even…, Genetic testing can help identify which diseases an individual is at risk of. De Boeck K. Cystic fibrosis in the year 2020: A disease with a new face. Classical cystic fibrosis is thus characterised by chronic pulmonary infection and inflammation, pancreatic exocrine insufficiency, male . Ann Intern Med. Chronic lung infections and inflammation cause a progressive decline in lung function and, eventually, respiratory failure. However, this figure is constantly increasing as researchers discover new treatments and medications. The average life expectancy is about 47 years for half of those born with cystic . Babies born with CF in the last five years have a median survival age of 48—meaning half are expected to live to age 48 years or older—and this figure is likely an underestimate. Using Jennifer Hale's own writings and images as well as interviews with Jennifer's parents, Evan Michael Codell and Donna Codell, presents the life and experiences of Jennifer Hale and her family as Jennifer lived with cystic fibrosis. Cystic-Fibrosis.com does not provide medical advice, diagnosis or treatment. The following databases were searched PubMed, Embase and Web of Science from 1938 to December 31 2020. Andy Lipman first researched cystic fibrosis (CF) when he was 9 years old, wanting to find out more about the disease he'd been diagnosed with at birth. But people with cystic fibrosis are now living for longer because of advancements in treatment. PLoS ONE. Other statistics suggest that more than 50% of babies with CF born in 2018 and 50% of people with CF aged 30 or older in 2018 will likely reach at least their fifth decade of life. The estimated median life expectancy in cystic fibrosis just took a huge jump, from 41 to 47. For example, exposure to cigarette smoke or a low socioeconomic status may increase the risk of earlier death. Among those with two copies of F508del, women had a median survival age of 41, and men had a median survival age of 46. Often, people receive a combination of treatments, depending on their symptoms and complications. This can make early or preventive treatment possible and it can help…. Xeroderma Pigmentosum: Signs and Symptoms You Should Know About, Understanding the Basics of of Genes, DNA, and Chromosomes, Cystic Fibrosis and COVID-19: What You Need to Know, 7 Famous People Living With Cystic Fibrosis, Increasing Your Chances of Having a Longer Life, Stage 3B Non-Small Cell Lung Cancer Treatments and Prognosis, Infants with congenital disorders identified through newborn screening — United States, 2015-2017, Survival comparison of patients with cystic fibrosis in Canada and the United States: a population-based cohort study, Up-to-date and projected estimates of survival for people with cystic fibrosis using baseline characteristics: a longitudinal study using UK patient registry data, Cystic fibrosis survival: the changing epidemiology, Acute pulmonary exacerbations in cystic fibrosis, Elexacaftor-tezacaftor-ivacaftor: the first triple-combination cystic fibrosis transmembrane conductance regulator modulating therapy, Novel therapeutic approaches for the management of cystic fibrosis, Palliative care for patients with cystic fibrosis #265, 2017 patient registry: annual data report, Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry. Living with cystic fibrosis requires hours of daily management and can affect a person’s quality of life, stress level, and mood. The addition of Trikafta, a combination of three drugs that targets the defective protein caused by the mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, is expected to have a dramatic impact in increasing both life expectancy and quality of life. Key Facts n Cystic fibrosis is genetic. Life expectancy has improved so dramatically that there are now more adults with cystic fibrosis than children. Our website is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Those diagnosed after age 50 tend to have a long history of frequent bouts of colds, sinus infections, pneumonia, stomach pains. Survival rates that you see for the disease are based on population averages taken over many years. Cystic fibrosis (CF) is a life-limiting genetic condition wherein abnormally thick and sticky mucus is produced, causing complications that predominantly affect the respiratory, digestive and reproductive systems (Better Health Channel 2019). When discussing life expectancy, it is also important to consider a person’s quality of life. Average life expectancy upon creation of new CF treatment methods. Although better insights into the natural course of cystic fibrosis (CF) have led to treatment approaches that have improved pulmonary health and increased the life expectancy of individuals with this disorder, lung disease remains the main cause of morbidity and mortality in patients with CF. Cystic fibrosis is an invisible, life-shortening genetic . Society Information. How long someone with CF can expect to live depends on their age and the stage of their condition. The articles in this book try to answer these questions and give an overview of the current state of knowledge in NBS for CF. The current figures for life expectancy at birth are estimates that can change from one year to the next. Posted 10 m minutes ago . the average life span for a person with cystic fibrosis was about 18. . Found inside – Page 211Brayshaw, S. 2019. “Cystic fibrosis: Life expectancy.” National Jewish Health. Accessed August 18, 2020. https://www.nationaljewish.org/conditions/cystic-fibrosis-cf/ life- expectancy. 56. MacKenzie, T., Gifford, A.H., Sabadosa, K.A., ... This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply. Verywell Health's content is for informational and educational purposes only. Vav3 protein promotes cystic fibrosis, shows study. But new advances in the field promise to overcome these hurdles. 2017 patient registry: annual data report. The median predicted survival age is an internationally accepted way to estimate life expectancy. Cystic Fibrosis Foundation. Over the years, the life expectancy of cystic fibrosis patients has improved a lot. The autosomal recessive disease cystic fibrosis (CF) was once untreatable and deadly in childhood, but now most patients survive to adulthood. . The Cystic Fibrosis Foundation Patient Registry tracks people with CF who are receiving care at specialist centers across the United States. Then, between 1993 and 2017, median life expectancy leapt to age 44. It is important for people with CF to try to remain optimistic about the future, as scientists continue to make advances. 2013;16(4):446-447. doi:10.1089/jpm.2013.9515. Found inside – Page 23Retrieved on 11 Jan 2020 from: https://www.cysticfibrosis.org.uk/the-work-we-do/ uk- cf- registry/reporting- and- ... Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. A Day With Cystic Fibrosis. These complications typically affect the lungs, but they may also affect the: The leading causes of death among people with CF are respiratory failure and chronic progressive pulmonary disease. Online ahead of print. J Palliat Med. Accompanying CD-ROM contains: contents of book; continuous updates; slide image library; references linked to MEDLINE; pediatric guidelines; case studies; review questions. Thanks to advances in treatment and care, people with CF can now expect to live much longer. Reproductive health and fertility. blocks airways and leads to lung damage; traps germs and makes infections more likely; and. Cystic fibrosis is a hereditary disease that causes the body to produce thick and sticky mucus that can clog the lungs and obstruct the pancreas. It is important to note that small changes in the CF population can have significant effects on the calculations. Its causes, symptoms, and treatments are related. Also, the availability of newborn screening tests in all 50 states means that most people in the U.S. can receive a diagnosis and treatment at the earliest stage. Tremendous advances in CF treatments, such as improved methods for clearing the lungs of mucus, antibiotics, and nutritional supplements, have greatly extended the lifespan for people living with CF. It primarily affects the lungs and digestive system. Cystic fibrosis also affects the digestive system. This differs from person to person, however. Immunisation in the current management of cystic fibrosis patients. This book will be invaluable and entertaining for anyone who is involved in the care of patients with cystic fibrosis. Researchers have identified over 1,700 different mutations in the CFTR gene that lead to cystic fibrosis. Deford kept a journal of Alex’s courageous stand against the disease, documenting his family’s struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal. Cystic fibrosis (CF) can affect a person's quality of life and influence their life expectancy. In the 1980s life expectancy of people with cystic fibrosis was 14 years. © 2010–21 Health Union, LLC. They are also based on people who were born decades ago, when many therapies currently in use were unavailable. Found inside – Page 149Accessed May 14, 2020. 76. Cystic Fibrosis Foundation. Understanding changes in life expectancy. Available at https://www.cff.org/Research/ Researcher-Resources/Patient-Registry/Understanding- Changes-in-Life-Expectancy/. People with CF experience chronic lung infections and inflammation, which cause progressive damage to their lungs and . By 1990, thanks to full lung transplants and other scientific breakthroughs, children with cystic fibrosis lived until their late teens. Also, these predictions do not take into account the potential for improvements in care and treatment that may occur as people age. Cystic fibrosis (CF) is a progressive, genetic disease that affects roughly one in 5,000 people born in the United States. One theory is that estrogen, a hormone women have in higher amounts starting in puberty, plays a role. "These are the stories of CF warriors who refused to succumb to a distressfulprognosis, and instead thrived through the power of belief."--Megan Fox. Fox. What is Cystic Fibrosis? July 13, 2020 — Cystic fibrosis causes severe respiratory and digestive disorders. Found inside – Page 473For treatment of patients with class I nonsense mutations, molecules that allow “ribosomal read-through” of premature ... Overall, improvements in the management of cystic fibrosis have extended the median life expectancy to 50 years. These therapies are likely to extend the lifespan of people with those specific mutations. In 2012, of the 111 people who died from cystic fibrosis: 105 were aged 15-64 years old; 4 were aged 0-14 years; and. Cystic fibrosis (CF) is an inherited condition caused by mutations in the CFTR (cystic fibrosis transmembrane conductance regulator) gene located on the long arm of chromosome 7. Advancements made in recent years have lead to an increase in patients' life expectancy from 10 years to 37.5 years, on average. Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through its quality improvement programmes and research with the aim of extending life expectancy from 37 to 50 years by 2025. Nature. Found inside – Page 324Cystic fibrosis Cystic fibrosis (CF) is a genetic multisystem disease which primarily affects the respiratory, reproductive, and gastrointestinal systems, and has severe consequences on life expectancy. Key epidemiological data provided ... Semin Respir Crit Care Med. This mucus builds up in the breathing passages of the lungs and in the pancreas. Amy Kiefer, PhD, is a freelance science writer focused on health and biology. Cystic fibrosis survival: the changing epidemiology. Of those already over 30, half are expected to live into their early 50s. Cystic fibrosis is a rare disease.
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