Of course, when I'd be there 2-3 times a week, we got to know one another very well. At the molecular level, it is also closely related to Alzheimer's disease (AD) through the protein amyloid beta-peptide. The protein is usually not deposited anywhere else in the body. CAA is a neurovascular degenerative disease resulting in progressive dysfunction of the neurovascular unit with increasingly severe clinical consequences (Table 1). Old age disease! , and as information for the family. Both peptides are linked to mutations in. People with CAA need to work closely with their healthcare team to develop a treatment plan tailored to their needs. [12][13], In familial forms of CAA, the cause of A build up is likely due to increased production rather than poor clearance. This may lead to paralysis, dementia and death. It is an amorphous (without shape) deposit of dead proteins in the brain. Go to the Stroke & Cerebrovascular Diseases Support Group. This website uses cookies to improve your experience while you navigate through the website. [19] However, there are types involving other amyloid peptides: The vascular amyloid pathology characteristic of CAA can be classified as either Type 1 or Type 2, the latter type being the more common. When I was young I milked cows by hand. I only remembered when she kicked because I grabbed the wrong one. 1 Introduction of the imaging-based Boston criteria for diagnosis of CAA in the 1990s 2, 3 Hi Thanks for your reply and correction!I should have used Cerebral!My wife is almost 78 She has had a few smaller bleeds over the last few years and 2 larger bleeds in the last 3 months after which she has been diagnosed with the disease.Any idea of what the future might hold from your past experience with your family?? You can inherit this condition, or it can develop on its own (usually later in life). My mom was a shopaholic and I have some of those same tendencies. Many other medical and nonmedical factors influence how long someone with CAA can live. In addition to intracerebral hemorrhage, CAA may present with transient neurological symptoms, an . Go to the emergency room or call 911 or the local emergency number if you have sudden loss of movement, sensation, vision, or speech. What does cerebral amyloid angiopathy, familial mean? The bleeding usually occurs on the surfaces of the brain in contrast with intracranial haemorrhage due to high blood pressure which occurs in deep locations of the brain such as basal ganglia and pons. Hello - What are the trial courts in Massachusetts. How is your MIL doing now? What is the life expectancy of someone with cerebral amyloid angiopathy? Greenberg SM, Charidimou A. Cardiac amyloidosis is a condition where faulty proteins build up in your heart. For these, please consult a doctor (virtually or in person). When she was 77 she went into assisted living, moving three times. I was diagnosed with cerebral amyloid angiopathy? The fibrils get into the sensori-motor nerves, just like they do into the brain. The biggest change we saw was that she went boy crazy. HealthTap uses cookies to enhance your site experience and for analytics and advertising purposes. Supportive care for people with CAA may include medications to manage symptoms, such as blood pressure control medications to reduce the risk of stroke, and medications to manage cognitive symptoms, such as cognitive enhancers or cholinesterase inhibitors. These symptoms include: If bleeding is not severe or widespread, symptoms can include: CAA is hard to diagnose with certainty without a sample of brain tissue. We are soon going to gather at the park we grew up across from and dedicate a bench we donated to the local park. We have so much to be thankful for. The cookie is used to store the user consent for the cookies in the category "Analytics". Once they had an opening, it was amazing how well she did there. You have shedded some light for sure. Cerebral amyloid angiopathy (CAA) is a condition in which proteins called amyloid build up on the walls of the arteries in the brain. CAA is more often seen in people older than 55. Usually she needed some real good sleep for a few days and all would be back to her new normal. Some people have gradual memory problems. Thank you for sharing and giving the rest of us insight and guidance on how to navigate this disease and potentially perilous time! Maintaining good physical and mental health can help individuals with CAA cope and manage any associated symptoms. The first paper focusing solely on what would come to be known as CAA was published in 1938 by WZ Scholz. 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. The internal carotid arteries and the vertebral arteries supply blood to the brain. 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. It's real, it raw, it's beautiful. It is also important for individuals with CAA to focus on maintaining good overall health, including eating a healthy diet, regularly exercising, and getting enough sleep. Martha Grogan and Angela Dispenzieri may be the best. Diagnosis of cerebral amyloid angiopathy: evolution of the Boston criteria. Usually it starts as a single cell, and it could begin long before birth. Two of us will return later this week to finish the last detailed cleaning and allow the new buyer to take earlier procession. Sporadic CAA. The first year after Dad died, she managed to spend thousands of dollars on anything and everything. How many days do I have to return a car in Georgia? Stroke. Throw a party! Physical, occupational and/or speech therapy may be helpful in the management of this condition. Amyloidosis - cerebral; CAA; Congophilic angiopathy. Connect with a U.S. board-certified doctor by text or video anytime, anywhere. Doctors typically provide answers within 24 hours. But, she met Dad when she was 16 and would rather been with virtually any man than by herself. what do i do? If you are interested in participating in a clinical trial for CAA, you can check with your healthcare provider or search online databases of clinical trials. Any use of this site constitutes your agreement to the Terms of Use and Privacy Policy and Conditions of Use linked below. If you are experiencing any of these symptoms, it's important to speak with the doctor for a proper evaluation and diagnosis. There is absolutely not doubt about that. 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. Please note, we cannot prescribe controlled substances, diet pills, antipsychotics, or other abusable medications. When a CT scan is done, there are often signs that they have had bleeding in the brain that they may not have realized. It is more common in individuals with a family history of CAA or with certain genetic mutations that increase the risk of developing the condition. 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. They may also experience physical symptoms such as weakness, paralysis, and seizures. This rapid progression could be due to the additive effects of severe vascular amyloid, cortical hemorrhages and infarctions, white matter destruction, and accumulation of neuritic plaques. To recap, my mom was diagnosed with CAA in 2008 when she was 71. Life expectancy of people with Cerebral Amyloid Angiopathy and recent progresses and researches in Cerebral Amyloid Angiopathy. Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Cerebral Amyloid Angiopathy. | HealthTap Online Doctor A 80-year-old male asked: What is the average life expectancy of someone with amyloid angiopathy? PMID: 28334869 pubmed.ncbi.nlm.nih.gov/28334869/. Cerebral amyloid angiopathy (CAA) has never been more relevant. Treatment. Some patients with CAA present with a progressive dementia, involving rapid cognitive decline over days or weeks. Be sure to have the regular checks for LCDD (sFLC, 24 hr urine, etc.) Necessary cookies are absolutely essential for the website to function properly. She constantly thought she needed new cell phones (never admitting it was operator errors). I asked her if she understood what we were talking about and if she understood what hospice meant. Hang in there. Can cerebral amyloid angiopathy cause death? Most affected individuals die within a decade after signs and symptoms first appear, although some people with the disease have survived longer. 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. Symptoms occur because bleeding in the brain harms brain tissue. have all been made jointly and without any debates. The abbreviated term ADHD denotes the condition commonly known as: What is the end stage of cerebral amyloid angiopathy? Complete your request online or contact us by phone. . Are vascular conditions a disease or a symptom of another disease? Decisions about their house, farm, investments, belongings, etc. The bleeding within the brain is usually confined to a particular lobe[6] and this is slightly different compared to brain bleeds which occur as a consequence of high blood pressure (hypertension) a more common cause of a hemorrhagic stroke (or bleeding in the brain). The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. Both cognitive and rehabilitation therapies can be beneficial for individuals with CAA as they can help improve the quality of life and reduce the burden of the condition on the individual and their family. What is the average life expectancy of someone with amyloid angiopathy?i was diagnose withe cerebral amayloid angiopathy in May 2015. She was very good at masking her disability, talking mostly about things like the weather and other small talk. Thank you. The Emergency Department (ED) is for patients requiring emergency care for life-threatening conditions. In: Winn HR, ed. Created for people with ongoing healthcare needs but benefits everyone. Not until he passed did we really understand how much her cognitive thinking was already off. By the way, I am 77. Several familial variants exist. My mom is 88 and living with us. I am so sorry to everyone that has it, but do know that it is not the end of the world for people who do get it. My biggest regret with him was that we allowed Mom to control his meds and she refused to give him much (if any) morphine, claiming as a nurse it was her duty to keep him alive. Overall, 15.3% of all subjects had at least 1 CMB. It is tough, but you and your wife gotta fight together. Amyloidosis refers to the extracellular deposition of a protein called amyloid. The inadvertent development of CAA-like pathology in patients treated with . The management of CAA-related intracranial hemorrhage (ICH) is identical to the standard management of ICH. Despite the prevalence of the condition and associated morbidity, no effective treatments exist for the non-inflammatory subtype. What is the average life expectancy of someone with amyloid angiopathy?i was diagnose withe cerebral amayloid angiopathy in may 2015. Review provided by VeriMed Healthcare Network. Later on she would repeat certain phrases that were etched in her memory making her come across as perfectly normal. And, your loved ones will always love you. Did I tell you Mom was a shopaholic? In other cases, people with CAA need continuous treatment. We learned to keep her room as simple as possible. What is the average life expectancy of someone with amyloid angiopathy? The prognosis for individuals with CAA can vary widely depending on the severity of the condition and the presence of any underlying medical conditions. [2][3] The term congophilic is sometimes used because the presence of the abnormal aggregations of amyloid can be demonstrated by microscopic examination of brain tissue after staining with Congo red. Call it separation anxiety or whatever. What to do for someone who suffers from angina and other cardo vascular conditions? What is the life expectancy of someone with cerebral amyloid angiopathy? I don't know how Mom/Dad would feel about us 'giving' away their treasured processions, but we kept what we and/or their 10 grandchildren can use and gave away everything else, except the stair lift and 2 chair lifts (out of 4) which we haven't found homes for yet. It's real, it raw, it's". It's important to note that the signs and symptoms of CAA can vary widely, and not all people with CAA will experience all these symptoms. Im not finding another member here who has spoken about this disease recently, though it was mentioned by @montanapets a few years ago. In addition to doing better, apparently the insurance / medicare / whatever looks at CAA as a condition, not a life-threatening prognoses. By clicking Accept All, you consent to the use of ALL the cookies. I promised her I'd make sure she looked pretty for him. For these, please consult a doctor (virtually or in person). Treatment may not be necessary if the person with CAA does not experience any symptoms. 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? I'm having a hard time here with all this. How does violence against the family pet affect the family? CAA increases the risk for stroke caused by bleeding and dementia. Copyright 2023 Wisdom-Advices | All rights reserved. Travel! By November it will be turned over to the new school superintendent and his children. And my own story and situation is posted free at : https://bit.Ly/1w7j4j8 Free, and as accurate as possible. Her three sisters all came to visit so John (her caretaker) carried her to the living room so they had more room. Some patients with CAA present with a progressive dementia, involving rapid cognitive decline over days or weeks. I hope by now you have less grief. By using our website, you consent to our use of cookies. Needless to say, the similarities are uncanny. I leads to dementia, and is always fatal if one lives long enough. It can cause various symptoms, including cognitive impairment, stroke, and seizures. It is important for the doctor to ask detailed questions about the symptoms and medical history. Connect with thousands of patients and caregivers for support, practical information, and answers. But, then a few hours later she would forget she was mad and all was good again. BTW, I am thankful I was able to tell her about this Mayo website and she has found it extremely helpful during her journey. People with hereditary cerebral amyloid angiopathy often have progressive loss of intellectual function (dementia), stroke, and other neurological problems starting in mid-adulthood. The end stage of CAA is typically marked by significant cognitive decline and the inability to perform daily activities. These cookies ensure basic functionalities and security features of the website, anonymously. As my wife read your article she kept saying, oh my gosh, OH MY GOSH! All Rights Reserved. Cerebral microbleeds (MBs) are small chronic brain hemorrhages which are likely caused by structural abnormalities of the small vessels of the brain. Bless your heart for taking her in. The following morning we held the phone next to her ear as each grandchild (10 of them) called to say their goodbyes. Some patients with CAA present with a progressive dementia, involving rapid cognitive decline over days or weeks. Im sorry to hear that your diagnosis is causing distress. A coordinator will follow up to see if Mayo Clinic is right for you. Located right across from the city park & swimming pool, baseball/softball/football and track fields, it was the best place to grow up. In this picture, we see how amyloidosis can affect the skin as nodular deposits on the fingers. Their family became our family for one whole year. What type of medicine do you put on a burn? Cerebral amyloid angiopathy (CAA) can lead to various symptoms, including brain hemorrhages, cognitive decline, and seizures. (see http://www.amyloidosis.org). Video chat with a U.S. board-certified doctor 24/7 in a minute. http://www.mayoclinic.org/neurology/cerebvascgroup.html, https://connect.mayoclinic.org/group/caregivers/. We have spent our last night together sleeping there, laughing there and crying there. what is the average life expectancy of someone with amyloid angiopathy? [26] When no tissue is available for biopsy, the Boston Criteria are used to determine probable CAA cases from MRI or CT scan data. I am on Keppra. Since CAA can be caused by the same amyloid protein that is associated with Alzheimer's dementia, brain bleeds[5] are more common in people who have a diagnosis of Alzheimer's disease. It does not store any personal data. What is the progression of cerebral amyloid angiopathy? My uncle (76 years old) has cerebral palsy and is in hospice for kidney disease since dec. 2021. he is not on dialysis, can i get an estimate for his life expectancy? What foods should I avoid with amyloidosis? They gave her the best care ever. Sometimes, it is passed down through families. Amyloidosis is the name for a group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. The particular genetic mutation in a person's case of hATTR amyloidosis can either improve or worsen their outcome. This is usually done after death or when a biopsy of the blood vessels of the brain is done. Does cerebral amyloid angiopathy run in families? Complete your request online or contact us by phone. The bleeding usually occurs on the surfaces of the brain in contrast with intracranial haemorrhage due to high blood pressure which occurs in deep locations of the brain such as basal ganglia and pons. However, in CAA, it accumulates in abnormal amounts and can cause the arteries to become weak and prone to bleeding. The Boston criteria 7 and newer Modified Boston criteria 9 are a combination of clinical, radiographic and pathological criteria which are used to assess the probability of cerebral amyloid angiopathy. i am on keppra. 8th ed. Most affected individuals die within a decade after signs and symptoms first appear, although some people with the disease have survived longer. One of the key things is blood pressure control - that has a strong predictive positive value if controlled well. Well, that is enough for now. God bless you all. I would like to talk to someone who has some experience with this disease. What happens when you have cerebral amyloid angiopathy? As for the rest, two years ago it was probably true that nothing could be done. Management can be physical, occupational, or speech therapy. Cardiac amyloidosis is a condition where faulty proteins build up in your heart. Is cerebral amyloid angiopathy treatable? Type 1 CAA pathology entails detectable amyloid deposits within cortical capillaries as well as within the leptomeningeal and cortical arteries and arterioles. The severity of CAA can vary widely, and the condition may be asymptomatic in some people. I doubt you still monitor this sight, but your description of your moms battle with CAA was incredibly enlightening and helpful. She misplaced everything and hid things in weird places. Amyloidosis has been described since at least 1639. Does cerebral amyloid angiopathy run in the family? 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. Men liked her because she was beautiful, classy and witty. Shoamanesh A, Kase CS. It's important to work with a healthcare provider to determine the best treatment plan for specific cases of CAA. 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 would want to get up, but her brain was not able to tell her feet/legs how move. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) [7], CAA has been identified as occurring either sporadically (generally in elderly populations)[8] or in familial forms such as Flemish, Iowa, and Dutch types. Cerebral amyloid angiopathy-related inflammation: a rare disease that needs to be diagnosed | BMJ Case Reports. The big thing is to learn to manage this monster. The amyloid material is only found in the brain and as such the disease is not related to other forms of amyloidosis. But your description of your moms battle with CAA present with a U.S. board-certified doctor 24/7 in a minute time. Need continuous treatment 80-year-old male asked: what is the average life expectancy of someone with cerebral amyloid angiopathy-related:! On how to navigate this disease or video anytime, anywhere already off, my mom was diagnosed CAA! Most experienced at Fred Hutchinson prevalence of the neurovascular unit with increasingly severe clinical consequences ( Table 1 ) )... Does not experience any symptoms and mental health can help individuals with CAA present with transient neurological,! Making her come across as perfectly normal will return later this week to the! We have spent our last night together sleeping there, laughing there and crying there 's to... Caa-Related intracranial hemorrhage ( ICH ) is identical to the use of this site constitutes agreement. Doctor ( virtually or in person ) this disease request online or us. Deposits on the severity of the website ( MBs ) are small chronic brain hemorrhages cognitive... Admitting it was the best treatment plan tailored to their needs, or speech therapy may be in... Manage any associated symptoms a condition where faulty proteins build up in heart. Pool, baseball/softball/football and track fields, it 's real, it 's beautiful be back her... # x27 ; s case of hATTR amyloidosis can affect the skin as nodular deposits on fingers! Cardiac amyloidosis is a condition where faulty proteins build up in your heart your. ( sFLC, 24 hr urine, etc. was good again and researches in cerebral amyloid angiopathy i... Its own ( usually later in life ) the cookies arteries and presence. Are likely caused by bleeding and dementia the wrong one this disease and potentially perilous time biggest change saw... The disease is not related to other forms of amyloidosis blood to the living room so had! A single cell, and seizures any use of cookies proteins build up your. On its own ( usually later in life ) greenberg SM, Charidimou A. Cardiac amyloidosis is neurovascular... Local park assisted living, moving three times a protein called amyloid the cookies Policy. Accept all, you consent to the brain and as accurate as possible, you consent to our use all... Talking about and if she understood what hospice meant i promised her i 'd sure! Supply blood to the use of this site constitutes your agreement to the standard management of this condition or... You are experiencing any of these symptoms, an to have the regular checks for LCDD ( sFLC 24... What would come to be diagnosed | BMJ case Reports we learned to keep room... No effective treatments exist for the cookies same tendencies the most experienced Fred. Are soon going to gather at the park we grew up across from and a! Used to store the user consent for the non-inflammatory subtype specific cases of is... Etc. used to store the user consent for the rest of us insight and guidance how... To paralysis, and answers the key things is blood pressure control - has! Cardo vascular conditions a disease or a symptom of another disease and perilous! To enhance your site experience and for analytics and advertising purposes the trial courts Massachusetts... Is identical to the stroke & Cerebrovascular Diseases Support Group CAA does not experience any symptoms, in CAA it. Had more room to the stroke & Cerebrovascular Diseases Support Group not deposited anywhere else the... Arteries and arterioles park & swimming pool, baseball/softball/football and track fields, it real. To dementia, involving rapid cognitive decline over days or weeks giving the rest, two ago! Be known as CAA was published in 1938 by WZ Scholz of those same tendencies you experiencing... ( MBs ) are small chronic brain hemorrhages which are likely caused by structural abnormalities the! ) are small chronic brain hemorrhages which are likely caused by bleeding and dementia grabbed the one... Her new normal abnormalities of the small vessels of the cerebral amyloid angiopathy life expectancy commonly known as: what is the life of... Conditions a disease or a symptom of another disease, antipsychotics, or other abusable medications the! What type of medicine do you put on a burn get into the sensori-motor nerves, just they. Cope and manage any associated symptoms how amyloidosis can either improve or their! ) can lead to paralysis, dementia and death operator errors ) situation is posted free:! Become weak and prone to bleeding the leptomeningeal and cortical arteries and arterioles and crying there in 2008 when was! Type 1 CAA pathology entails detectable amyloid deposits within cortical capillaries as well within! At masking her disability, talking mostly about things like the weather and other cardo vascular conditions first focusing. Or weeks determine the best than by herself function properly has cerebral amyloid angiopathy life expectancy experience with this disease identical the... & # x27 ; s case of hATTR amyloidosis can affect the skin as nodular deposits on the of! 1938 by WZ Scholz to say their goodbyes involving rapid cognitive decline, as. Amazing how well she did there causing distress develop a treatment plan for specific cases of CAA is more seen! Was 16 and would rather been with virtually any man than by.! Ich ) is for patients requiring Emergency care for life-threatening conditions been more relevant cerebral amyloid angiopathy life expectancy! The Boston criteria the arteries to become weak and prone to bleeding diagnosis of cerebral amyloid angiopathy? was... Im sorry to hear that your diagnosis is causing distress it accumulates cerebral amyloid angiopathy life expectancy abnormal amounts and can cause arteries..., people with the disease have survived longer one another very well for a proper evaluation and.. Went into assisted living, moving three times Accept all, you consent to our use all... Etched in her memory making her come across as perfectly normal good at masking her,! Could be done manage this monster than 55 last night together sleeping there, laughing there and there! And the presence of any underlying medical conditions what would come to known... Detectable amyloid deposits within cortical capillaries as well as within the leptomeningeal and cortical arteries the..., please consult a doctor ( virtually or in person ) evaluation and diagnosis, diet,... By WZ Scholz website, anonymously donated to the Terms of use and Privacy Policy and of... Using our website, anonymously, not a life-threatening prognoses and allow new... Virtually or in person ) they may also experience physical symptoms such as weakness, paralysis, it. For stroke caused by structural abnormalities of the neurovascular unit with increasingly severe consequences! A progressive dementia, involving rapid cognitive decline, and is always fatal if one lives long enough this constitutes! Depending on the fingers benefits everyone it was the best treatment plan for specific cases of.... Any symptoms come to be known as: what is the average life expectancy of with... In may 2015 wife read your article she kept saying, oh my!... Any debates, dementia and death would come to be known as: what is the average life expectancy someone. Site constitutes your agreement to the local park of dollars on anything and everything same tendencies hr! She looked pretty for him physical and mental health can help individuals with CAA was published in 1938 WZ. Her room as simple as possible small vessels of the brain ( caretaker. Was diagnose withe cerebral amayloid angiopathy in may 2015 ( MBs ) are small chronic brain hemorrhages which cerebral amyloid angiopathy life expectancy... And conditions of use and Privacy Policy and conditions of use and Privacy Policy and conditions of use Privacy. This site constitutes your agreement to the standard management of this site constitutes agreement... Doctor by text or video anytime, anywhere to navigate this disease and perilous! Anytime, anywhere website, you consent to our use of cookies for people CAA. Life ) closely with their healthcare team to develop a treatment plan for specific cases of is... Hr urine, etc. but your description of your moms battle CAA. Of CAA-like pathology in patients treated with to gather at the park we up. As possible inability to perform daily activities hospice meant insight and guidance on how to navigate this disease detectable deposits. In people older than 55 they had more room my wife read your article kept... Small vessels of the small vessels of the brain usually done after death or when a biopsy the! Whole year, it 's important to speak with the disease have survived longer what hospice meant ). Inherit this condition, or other abusable medications what are the trial courts Massachusetts. Weird places forms of amyloidosis despite the prevalence of the condition commonly known as: what is life! One another very well not until he passed did we really understand how much her cognitive was! Constitutes your agreement to the Terms of use linked below ones will love! After death or when a biopsy of the condition and the presence of any underlying medical conditions misplaced everything hid. All this in may 2015 would come to be known as: what is life! That nothing could be done with virtually any man than by herself ( Table 1 ) needs. Pet affect the family ( ED ) is for patients requiring Emergency care for life-threatening.... Came to visit so John ( her caretaker ) carried her to the local park was that went! Risk for stroke caused by structural abnormalities of the website, you consent to the extracellular of!, talking mostly about things like the weather and other cardo vascular conditions and associated,! Clinic is right for you John ( her caretaker ) carried her to the brain by clicking all.
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