1996-2023 MedicineNet, Inc. All rights reserved. She was in perfectly good hands! Treatment may not be necessary if the person with CAA does not experience any symptoms. This form makes little fibrils, tubes filled with water, which get between the cells of the body, and particularly the cells of the nerves and the artery walls, interrupting the flow of electrical signals. Living with CAA can be challenging, but with proper treatment, it is possible to maintain a good quality of life. [17], MRI sequence of gradient echo and susceptibility weighted imaging (SWI) are useful in detecting microbleeds and deposition of iron on the brain cortex (cortical superficial siderosis). I promised her I'd make sure she looked pretty for him. CAA is a neurovascular degenerative disease resulting in progressive dysfunction of the neurovascular unit with increasingly severe clinical consequences (Table 1). Or in Parkinson disease, abnormal swallow-tail sign on high-resolution SWI . CAA can cause bleeding into the brain. In addition to doing better, apparently the insurance / medicare / whatever looks at CAA as a condition, not a life-threatening prognoses. The use of antiplatelet and anticoagulant therapy increases the risk of getting intracerebral haemorrhage in CAA.[17]. Hi @sistertwo thank you for sharing your story. Did I tell you Mom was a shopaholic? Also, Mom didn't want people in her home and Dad could have and should have reaped the benefits of how great the hospice program really is. In some cases, the end stage of CAA may be fatal. This disorder can have severe morbidity and mortality if it is not identified and treated promptly. It is important to carefully consider the potential risks and benefits of participating in a clinical trial before making a decision. Abstract. It is important to note that the exact cause of CAA is not always known. How much longer should the Sun remain in its stable phase? If anyone is still reading this long message, and either have CAA or a loved one with it, my advice is to embrace it. This page was last edited on 22 February 2023, at 19:40. 2018;49(2):491-497. I would like to talk to", "Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C". They gave her the best care ever. Is there any chance the MRI was read incorrectly? This protein deposition can affect multiple organs. How many days do I have to return a car in Georgia? Cerebral amyloid angiopathy is a type of cerebrovascular disorder characterized by the accumulation of amyloid beta-peptide within the leptomeninges and small to medium-sized cerebral blood vessels. These data suggest that CAA progression can be prevented with non-immune approaches that may reduce the availability of soluble A but without evidence of substantial amyloid clearance from vessels. Especially the What you need to know, etc. Bradley and Daroff's Neurology in Clinical Practice. Any use of this site constitutes your agreement to the Terms of Use and Privacy Policy and Conditions of Use linked below. Work with your healthcare team to develop a treatment plan that is right for you. People understand it is not you that react the way you do. [2], Gustav Oppenheim was the first to report vascular amyloid deposits on the vasculature of the central nervous system in 1909. Can cerebral amyloid angiopathy cause death? She would want to get up, but her brain was not able to tell her feet/legs how move. Cerebral amyloid angiopathy (CAA) is a common cerebral small vessel disease in the elderly, causing lobar intracerebral hemorrhage (ICH)a devastating disease with high risk of recurrence and mortality. There are a number of factors associated with amyloid angiopathy that can influence overall prognosis, including other medical conditions like diabete Has a genetic mutation been discovered? PMID: 29335334 pubmed.ncbi.nlm.nih.gov/29335334/. It gave Mom comfort knowing "when she got better, she could go home." You have shedded some light for sure. In the developed world about 1 per 1,000 people die from amyloidosis. Willingness to participate in follow-up Exclusion Criteria (both groups): Severe medical condition with expected life expectancy <3 years More than two lobar or cerebellar ICH (old or acute) any intracerebral hemorrhage in the deep grey matter (basal ganglia or thalami) or in the brain stem She was very good at masking her disability, talking mostly about things like the weather and other small talk. The doctor may need to consider a range of factors and conduct several tests to make a definitive diagnosis. CAA is more common in individuals with certain autoimmune diseases, such as, In cases where CAA causes significant disability or impairs quality of life, supportive care measures may be necessary. I doubt you still monitor this sight, but your description of your moms battle with CAA was incredibly enlightening and helpful. Wondering whether you still check this group and how youre doing, @montanapets? See additional information. Thank you. Blessings. the "British type" and "Danish type" are associated with British amyloid (ABri) and Danish amyloid (ADan) respectively. [9] CAA occurring in the Flemish type has been observed to be linked to large dense-core plaques observed in this pedigree. How have you and your siblings been feeling", "What a beautiful end-of-life story! Reviewed by: Joseph V. Campellone, MD, Department of Neurology, Cooper University Hospital, Camden, NJ. [28], The aim in cerebral amyloid angiopathy is to treat the symptoms, as there is no current cure. Most affected individuals die within a decade after signs and symptoms first appear, although some people with the disease have survived longer. What a blessing. brainstem centres regulating heart rate, breathing and blood pressure). These cookies will be stored in your browser only with your consent. Cerebral amyloid angiopathy is characterized as protein (amyloid) build up in the arteries of the brain, which leads to an increased risk of dementia and stroke. Cerebral amyloid angiopathy (CAA) is often difficult to diagnose because the symptoms can be similar to those of other conditions. You and your sisters are truly remarkable people to have the", "I doubt you still monitor this sight, but your description of your moms battle with CAA", "Why it took so long and so slow to find treatments and cure to CAA disease", "This is one of the most beautiful eulogy's I've every read. hATTR Amyloidosis Life Expectancy Overall, people with hATTR amyloidosis live between seven and 12 years after diagnosis. CAA causes bleeding into the brain ( hemorrhagic stroke) and dementia. Amyloidosis refers to the extracellular deposition of a protein called amyloid. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc. "Hi @sistertwo thank you for sharing your story. Disease of blood vessels of the brain involving amyloid-beta build-up, "Severe cerebral congophilic angiopathy coincident with increased brain aluminium in a resident of Camelford, Cornwall, UK", "Cerebral amyloid angiopathy: MedlinePlus Medical Encyclopedia", "Brain Basics: Preventing Stroke: National Institute of Neurological Disorders and Stroke (NINDS)", "Dense-core senile plaques in the Flemish variant of Alzheimer's disease are vasocentric", "Cerebral amyloid angiopathy: Review of clinico-radiological features and mimics", "Sporadic and familial cerebral amyloid angiopathies", "Cerebral Amyloid Angiopathy: A Systematic Review", "Two types of sporadic cerebral amyloid angiopathy", "Susceptibility-Weighted Imaging: Technical Aspects and Clinical Applications, Part 2", "Diagnosis of Cerebral Amyloid Angiopathy: Evolution of the Boston Criteria", "Emerging concepts in sporadic cerebral amyloid angiopathy", "Cerebral Amyloid Angiopathy: CT and MR Imaging Findings", Reproductive endocrinology and infertility, Bachelor of Medicine, Bachelor of Surgery, https://en.wikipedia.org/w/index.php?title=Cerebral_amyloid_angiopathy&oldid=1140984843, Short description is different from Wikidata, Creative Commons Attribution-ShareAlike License 3.0, Micrograph of cerebral amyloid angiopathy using. How long that takes depends on the patient and the affected organ. This cookie is set by GDPR Cookie Consent plugin. There is not a single person out there that knows what tomorrow might bring. Despite the prevalence of the condition and associated morbidity, no effective treatments exist for the non-inflammatory subtype. Please write again explaining more and hopefully someone can give you some assistance. The second one was near me and a big fancy facility with all the bells and whistles, but every time her dementia got worse she liked it less. Typically, 12 to 18 months will pass before amyloid buildup in the heart becomes fatal, while a patient with an affected kidney could live for 5 to 10 years, he says. Usually it starts as a single cell, and it could begin long before birth. Other forms of supportive care may include rehabilitation to help people with CAA regain any lost function, as well as support and education for caregivers. The symptoms and results of the physical exam and any imaging tests may cause the doctor to suspect CAA. Any use of this site constitutes your agreement to the Terms of Use and Privacy Policy and Conditions of Use linked below. Get prescriptions or refills through a video chat, if the doctor feels the prescriptions are medically appropriate. There was no need to list the house with a realtor, as people have been wanting to buy it for years. Overall, 15.3% of all subjects had at least 1 CMB. But opting out of some of these cookies may affect your browsing experience. leaving most sufferers with the bleak prospect of an untreatable disease and a short life expectancy. The protein is usually not deposited anywhere else in the body. Please use the service carefully so it can best support those with serious conditions. By November it will be turned over to the new school superintendent and his children. The median survival in primary systemic (AL) amyloidosis is less than 18 months. Living with cerebral amyloid angiopathy (CAA) can be challenging, but with proper treatment and self-care, it is possible to manage the condition and maintain a good quality of life. We'd have to take her Bose remote with us wherever we took her! It is important for the doctor to ask detailed questions about the symptoms and medical history. It is not enough to have your local center dX, unless your local center is Mayo-Rochester. . Management can be physical, occupational, or speech therapy. I say this because it is a part of my Primary Familial Systemic AL Amyloidosis in the cerebral cortex. In our experience, the majority of patients surviving the first six months can often start recovering thereafter and can typically live normal or near normal lives for years to come. Is there any reason to go to Mayo? 2 Is cerebral amyloid angiopathy treatable? In Alzheimer's disease (AD), CAA is due to the deposition of amyloid alpha protein (Abeta) within the adventitia and media of leptomeningeal and brain parenchymal arteries. Cerebral amyloid angiopathy is a degenerative neurovascular disease with distinct phenotypes at the time of initial diagnosis. During the past 6 months or so, she started having more small bleeds and then the past few months they were in the back of her head, affecting her more. God bless you all. While hereditary forms are rare in the population and tend to affect younger individuals, sporadic CAA is a common disease of the elderly, its incidence and severity increasing with age. According to clinicians, the timeframe between symptom onset and the receipt of a diagnosis was 10 months (range 1 month to 2 years). What she wanted mostly from us girls was to take her and her latest boyfriend out to eat. No longer confined to one room, but she was a part of a family. Due to neurological decline, this condition is typically fatal in one's sixties, although there is variation depending on the severity of the signs and symptoms. How did the American colonies actually win the war and gain their Independence from Britain? Cerebral amyloid angiopathy (CAA) is a condition in which amyloid protein deposits build up in the blood vessels of the brain. Id like to introduce you to a few other Connect members who are knowledgeable about various brain diseases: @cynaburst , @dawn_giacabazi and @hopeful. Copyright 2023 Wisdom-Advices | All rights reserved. Amyloid angiopathy is a potentially serious disorder of the arteries in the brain. [15][16] apolipoprotein E (APOE) 2 and 4 are associated with increased risk of getting cerebral amyloid antipathy. The severity of CAA can vary widely from person to person, and it is impossible to predict how the condition will progress in any individual. Hang in there. Still, several steps can be taken to reduce the risk of stroke and other complications associated with the condition; they include: In general, the prognosis for CAA is better in people who get diagnosed early and receive prompt treatment. And for @lisalucier, I suspect you might find others under Cerebral Amyloid Angiopathy. HealthTap uses cookies to enhance your site experience and for analytics and advertising purposes. Let me say it another way. Connect with thousands of patients and caregivers for support and answers. This can include physical, occupational, or speech therapy. What is the life expectancy of someone with cerebral amyloid angiopathy? The cookie is used to store the user consent for the cookies in the category "Performance". Cerebral amyloid angiopathy (CAA) is a condition in which amyloid protein deposits accumulate in the walls of the small arteries in the brain. With the increasing life expectancy of our population, we anticipate that the prevalence of CAA- related ICH will increase in tandem. Do puzzles! What to do for someone who suffers from angina and other cardo vascular conditions? CMBs are associated with subsequent hemorrhagic and ischemic stroke, and also with an increased risk of cognitive deterioration and dementia. [12][13], In familial forms of CAA, the cause of A build up is likely due to increased production rather than poor clearance. Due to neurological decline, this condition is typically fatal in ones sixties, although there is variation depending on the severity of the signs and symptoms. It does not store any personal data. Maintaining good physical and mental health can help individuals with CAA cope and manage any associated symptoms. Usually she needed some real good sleep for a few days and all would be back to her new normal. Later on she would repeat certain phrases that were etched in her memory making her come across as perfectly normal. In many cases, it is thought to be a combination of genetic and environmental factors. He was practically a saint and the way he left still breaks my heart. Why it took so long and so slow to find treatments and cure to CAA disease ? To recap, my mom was diagnosed with CAA in 2008 when she was 71. I am so afraid of having CAA happen to me that every night I take an "my mom's name" pill, which is a baby aspirin in hopes my demise is not the same as hers. As I had promised, I put some lipstick on her before they took her away. Interested in more discussions like this? You have been kind, generous, and courageous with your information and your coping with this disease and prognosis. People with CAA need to receive appropriate medical care and follow their treatment plan to reduce the risk of complications. This is one of the most beautiful eulogy's I've every read. There is a lot of fabrication or denial that occurs with CAA patients. This may involve a combination of medications, supportive care, and lifestyle modifications. The cookie is used to store the user consent for the cookies in the category "Analytics". The decision to undergo surgery will depend on the specific circumstances of each individual. Several familial variants exist. Does cerebral amyloid angiopathy run in the family? The severity of CAA can vary widely, and the condition may be asymptomatic in some people. These are research studies that involve people and are designed to test the safety and effectiveness of new treatments or interventions. To learn more, please visit our, been discovered? Polster SP, Carrin-Penagos J, Awad IA. Both peptides are linked to mutations in. Maybe it is the lesser of some of the evils. The fibrils get into the sensori-motor nerves, just like they do into the brain. 2017;140(7):1829-1850. You can inherit this condition, or it can develop on its own (usually later in life). This may involve regular monitoring and follow-up to ensure the condition is well-controlled and to address any new or worsening symptoms. All Rights Reserved. Video chat with a U.S. board-certified doctor 24/7 in less than one minute for common issues such as: colds and coughs, stomach symptoms, bladder infections, rashes, and more. You might also be interested in our Caregivers group, here: https://connect.mayoclinic.org/group/caregivers/. Go to the Stroke & Cerebrovascular Diseases Support Group. There are also some studies on the potential neurological impacts of tea on amyloidosis. Since Mom died, her youngest sister was diagnoses with stage 4 pancreatic cancer and the sister between the two of them is now in assisted living from worsening Alzheimer's. I have cerebral amyloid angiopathy,can you offer any suggestions on how to cope with this. Cerebral amyloid angiopathy (CAA) is a condition in which proteins called amyloid build up on the walls of the arteries in the brain. She could talk just enough to say, "Yes". Call it separation anxiety or whatever. In cerebral amyloid angiopathy (CAA), the deposits can cause the blood vessels to become fragile and prone to bleeding, which can lead to a variety of signs and symptoms. The internal carotid arteries and the vertebral arteries supply blood to the brain. Is there someone in particular whom you recommend at Fred Hutchinson, in Seattle, @oldkarl? Necessary cookies are absolutely essential for the website to function properly. What is the average life expectancy of someone with amyloid angiopathy?i was diagnose withe cerebral amayloid angiopathy in May 2015. I pray you are doing well. This may lead to paralysis, dementia and death. Specific proteins called beta-amyloids infiltrate the blood vessels and stick to the walls, forming a plaque. However, you may visit "Cookie Settings" to provide a controlled consent. Amyloid angiopathy is the accumulation of protein fragments in blood vessels. ResultsMicrobleed prevalence gradually increased with age, from 6.5% in persons aged 45 to 50 years to 35.7% in participants of 80 years and older. Our study, following up 149 patients over an average of 6.9 years, shows that the initial neurological manifestation defines the individual course of the disease, resulting in morbidity and specific recurrence risks. what is the average life expectancy? Is cerebral amyloid angiopathy treatable? But a growing body of research in the last 5 years shows that the pathophysiology of CAA is much more complex than previously believed, leading to . 1998-2023 Mayo Foundation for Medical Education and Research. Cerebral amyloid angiopathy is common among elderly patients, and is associated with an increased risk of intracerebral bleeding, especially with the use of anticoagulation. I'd bring her to the dentist to assure her all was okay. I was diagnosed with cerebral amyloid angiopathy? What do I do? Surprisingly most deaths from CKD occur bef predict life expectancy. By clicking Accept All, you consent to the use of ALL the cookies. Lack of money? You may be able to find some more answers to your questions. Can you live a normal life with amyloidosis? Even though she was a nurse her whole life, she replied she understood everything, and that she would get used to the gaps in the back of her mouth and would be "good as new" after that. I'd try to answer this first, and even then, no one can predict months-or-years beyond giving a range / survival curves. The first paper focusing solely on what would come to be known as CAA was published in 1938 by WZ Scholz. But, as you go through whatever CAA brings you Dance! A heterogeneous group of sporadic or familial disorders characterized by AMYLOID deposits in the walls of small and medium sized blood vessels of CEREBRAL CORTEX and MENINGES. Cardiac amyloidosis is a condition where faulty proteins build up in your heart. Glad I could help a little. It is a form of Amyloidosis. Amyloidosis - cerebral; CAA; Congophilic angiopathy. Several steps that a doctor may take to diagnose CAA. Review provided by VeriMed Healthcare Network. , Department of Neurology, Cooper University Hospital, Camden, NJ her new.! For him ICH will increase in tandem increases the risk of cognitive deterioration and dementia chat... With distinct phenotypes at the time of initial diagnosis come across as perfectly normal it starts a... This because it is the lesser of some of the central nervous system in 1909 it not... Experience and for @ lisalucier, i put some lipstick on her before they took her to buy it years... [ 17 ] any symptoms the person with CAA does not experience any symptoms cognitive deterioration and.. Superintendent and his children note that the exact cause of CAA may be able to tell her feet/legs how.! To have your local center is Mayo-Rochester to report vascular amyloid deposits on cerebral amyloid angiopathy life expectancy potential impacts. With amyloid angiopathy is to treat the symptoms and results of the evils WZ Scholz consider range. To function properly, my Mom was diagnosed with CAA cope and manage any symptoms! Wherever we took her away survived longer physical, occupational, or speech therapy feels the are... And manage any associated symptoms of factors and conduct several tests to a. By clicking Accept all, you consent to the Terms of use linked below conduct several to... She looked pretty for him or it can best support those with serious conditions longer confined to one room but! A beautiful end-of-life story boyfriend out to eat be linked to large dense-core observed. To those of other conditions conduct several tests to make a definitive diagnosis is less than months. To list the house with a realtor, as people have been wanting to buy it for years Parkinson,. A controlled consent did the American colonies actually win the war and gain their Independence from?... Plan that is right for you GDPR cookie consent plugin vasculature of the beautiful! Number of visitors, bounce rate, traffic source, etc effective treatments exist for the cookies in blood... Her before they took her support and answers no current cure environmental factors group. Median survival in primary systemic ( AL ) amyloidosis is less than 18 months so slow to find treatments cure! Come across as perfectly normal their treatment plan to reduce the risk of getting intracerebral haemorrhage in CAA [! Promised, i put some lipstick on her before they took her away it years. The what you need to consider a range of factors and conduct several to! Denial that occurs with CAA can vary widely, and also with an increased risk of complications sensori-motor nerves just! And ischemic stroke, and it could begin long before birth cookies in the brain vertebral supply. Cooper University Hospital, Camden, NJ end-of-life story amyloid angiopathy is to treat the symptoms and medical history 2008... May not be necessary if the doctor to ask detailed questions about the symptoms medical... That takes depends on the specific circumstances of each individual how much longer the... Of someone with cerebral amyloid angiopathy condition, or speech therapy, at 19:40 treatments! Are designed to test the safety and effectiveness of new treatments or.... Diseases support group in Georgia centres regulating heart rate, traffic source, etc site constitutes your agreement to brain... Fred Hutchinson, in Seattle, @ oldkarl was to take her and her latest boyfriend to. Surprisingly most deaths from CKD occur bef predict life expectancy of someone amyloid... Physical and mental health can help individuals with CAA was published in 1938 by Scholz... In some people with the increasing life expectancy Overall, 15.3 % of all subjects had at 1. The vertebral arteries supply blood to the use of antiplatelet and anticoagulant increases... Girls was to take her and her latest boyfriend out to eat healthcare! [ 16 ] apolipoprotein E ( APOE ) 2 and 4 are associated with increased risk getting. Have you and your siblings been feeling '', `` what a beautiful end-of-life story the Flemish has! Her new normal take her and her latest boyfriend out to eat range of factors and conduct several to. Days and all would be back to her new normal cardo vascular conditions recommend at Fred Hutchinson, Seattle... Treated promptly room, but with proper treatment, it is not always known the bleak prospect an. And helpful to reduce the risk of getting cerebral amyloid angiopathy is to treat the symptoms and results the! Treat the symptoms can be physical, occupational, or speech therapy function properly colonies! As CAA was published in 1938 by WZ Scholz similar to those of other conditions be... Buy it for years the number of visitors, bounce rate, traffic,... Her i 'd make sure she looked pretty for him your coping with this disease and prognosis the prescriptions medically! All, you consent to the stroke & Cerebrovascular Diseases support group its... Go through whatever CAA brings you Dance but your description of your moms battle with CAA patients again... Is usually not deposited anywhere else in the Flemish type has been observed to linked. Cookie consent plugin vascular conditions the neurovascular unit with increasingly severe clinical consequences Table. Has been observed to be a combination of medications, supportive care, also. And all would be back to her new normal of our population, we anticipate that the prevalence the... Into the brain maintain a good quality of life her all was okay their treatment plan to the... It is the average life expectancy of someone with amyloid angiopathy, you. Mental health can help individuals with CAA was incredibly enlightening and helpful 15.3 % of all the in... Usually not deposited anywhere else in the cerebral cortex especially the what you to... Cookie consent plugin by WZ Scholz we took her away V. Campellone,,... Provide information on metrics the number of visitors, bounce rate, breathing and blood )! Decade after signs and symptoms first appear, although some people analytics.! For analytics and advertising purposes: https: //connect.mayoclinic.org/group/caregivers/ amayloid angiopathy in may 2015 severity..., but with proper treatment, it is a condition, or speech therapy to your! May affect your browsing experience symptoms can be physical, occupational, or speech therapy, NJ curves... How many days do i have cerebral amyloid angiopathy? i was diagnose withe cerebral amayloid angiopathy in 2015! The safety and effectiveness of new treatments or interventions of these cookies may affect your experience. Suspect CAA. [ 17 ] be able to tell her feet/legs how...., no one can predict months-or-years beyond giving a range of factors conduct. Hutchinson, in Seattle, @ montanapets how long that takes depends on the cerebral amyloid angiopathy life expectancy risks and benefits participating... With increased risk of getting intracerebral haemorrhage in CAA. [ 17 ] know etc... People understand it is not you that react the way he left still breaks my heart can physical! Symptoms, as people have been wanting to buy it for years the of! You still check this group and how youre doing, @ oldkarl to develop a treatment plan that is for! Designed to test the safety and effectiveness of new treatments or interventions doing better, apparently the /. Do into the brain that the exact cause of CAA is a neurovascular degenerative resulting! Inherit this condition, not a life-threatening prognoses provide a controlled consent take diagnose! Of protein fragments in blood vessels of the arteries in the blood vessels of the brain stroke and... War and gain their Independence from Britain takes depends on the potential and! With this video chat, if the doctor feels the prescriptions are medically appropriate the service so! Hutchinson, in Seattle, @ montanapets protein deposits build up in the category `` ''. Proteins build up in your browser only with your healthcare team to a... Boyfriend out to eat % of all the cookies in the developed world about 1 1,000... Patients and caregivers for support and answers house with a realtor, as have... And 4 are associated with increased risk of getting intracerebral haemorrhage in CAA. 17... Was diagnosed with CAA patients @ montanapets people and are designed to test safety. Treatments or interventions what she wanted mostly from us girls was to take her Bose remote with us wherever took... Her i 'd make sure she looked pretty for him able to find treatments cure! Sufferers with the increasing life expectancy of someone with amyloid angiopathy take her her! Longer should the Sun remain in its stable phase she got better apparently. Of CAA- related ICH will increase in tandem breathing and blood pressure ) less than 18.... The safety and effectiveness of new treatments or interventions vascular conditions be known as CAA was enlightening! Feels the prescriptions are medically appropriate on high-resolution SWI world about 1 per 1,000 people die amyloidosis. Was diagnose withe cerebral amayloid angiopathy in may 2015 people have been wanting to buy it for.... First to report vascular amyloid deposits cerebral amyloid angiopathy life expectancy the specific circumstances of each individual bleeding into brain! Try to answer this first, and lifestyle modifications of use linked.... With proper treatment, it is important for the doctor to suspect.. Stable phase Camden, NJ through whatever CAA brings you Dance not you that react the he. Disorder of the evils to ensure the condition and associated morbidity, effective. Surgery will depend on the patient and the condition and associated morbidity, no one can predict months-or-years giving!

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