how rare is polycythemia vera

Learn more orphan products. Once patients become aware of the illness, treatment is crucial, as proper care generally allows a much better quality of life. Treatment is aimed at reducing red blood cell numbers. FDA-approved indication: Treatment of patients with intermediate or high-risk myelofibrosis, including primary myelofibrosis, post-polycythemia vera myelofibrosis and post-essential thrombocythemia myelofibrosis. Secondary polycythemia affects some people as a result of limited oxygen due to smoking or living at high altitudes. Primary myelofibrosis (also called chronic idiopathic myelofibrosis) — in this disease, the bone marrow makes too much collagen. Polycythemia vera presenting with bilateral papilledema: a rare case report Indian J Ophthalmol. Rather, if a person has a mutation in one of these genes, he or she has an increased risk to develop PV during his or her lifetime.[3]. If a blood clot occurs in the veins deep in the arms and the legs, it is known as deep vein thrombosis (DVT). Polycythemia vera is a rare blood disease that increases your risk of dangerous blood clots and other complications. opt: { Rare polycythemia vera condition diagnosed as cause for Life-threating case. It's not curable, but it is treatable. For mild cases, treatment may include avoiding triggers of itching and dry skin such as hot environment or bathing water. handler: function (opt) { PV occurs more frequently in men than it does in women. What best describes you when it comes to rare disease? PV occurs when the body produces too many red blood cells, which causes the blood to thicken. At Memorial Sloan Kettering, we have world-class expertise in diagnosing and treating blood cancers and other rare blood disorders. This can make the blood thicker than normal. Rare Ophthalmology News Most of the health concerns associated with polycythemia vera are caused by the blood being thicker as a result of the increased red blood cells. The body quickly replaces the fluid removed with the red blood cells, usually within 6 hours. When too many red blood cells are produced, the blood becomes thick, hindering its passage through the smaller blood vessels. Polycythemia Vera: New Drug Treats Rare Blood Disorder. }()); Offers information on polycythemia vera, a myeloproliferative disorder in which the abnormal bone marrow produces too many red blood cells, provided by the Leukemia Research Fund. Name some common causes of secondary polycythemia. Without treatment, polycythemia vera can develop into another form of cancer. Two treatment techniques are used, generally in conjunction with one another, to reduce the number of circulating RBCs in an animal with polycythemia: (1) removing some of the blood and (2) administering medication to slow down production of RBCs in the bone marrow. Primary Objective: - To evaluate the efficacy of once daily dose of SAR302503 in subjects previously treated with ruxolitinib and with a current diagnosis of intermediate-1 with symptoms, Intermediate-2 or high-risk primary myelofibrosis (PMF), post-polycythemia vera myelofibrosis (Post-PV MF), or post-essential thrombocythemia myelofibrosis (Post-ET MF) based on the reduction of spleen volume . s.type = "text/javascript"; Our mission is to inform the healthcare community about the diagnosis and management of rare diseases. From other sources, what tips have you learned about living with polycythemia vera? Then, the conversation turns from bad to worse all too quickly. Rare Oncology News However, not every person who has a mutation in JAK2 or TET2 will necessarily develop PV. var plc492613 = window.plc492613 || 0; Visit the following Facebook groups related to Polycythemia vera: Medscape Reference provides information on this topic. This concise handbook will be invaluable to clinicians, medical students, nurses, pharmacists and scientists in understanding and overcoming the everyday and rarer challenges associated with MPN. Aims to determine whether mutations of the gene encoding hβc (CSF2RB) are present in Polycythemia vera. Rare Dermatology News In rare cases, the risk for PV runs in families and may be inherited in an autosomal dominant manner.[2]. If, however, secondary causes of polycythemia are absent, then the diagnosis is polycythemia vera ('true' or primary polycythemia). Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. PV is a myeloproliferative disorder characterized predominantly by erythroid hyperplasia, but also by myeloid leukocytosis, thrombocytosis, and splenomegaly. document.write('<' + 'div id="placement_492613_' + plc492613+ '">'); s.async = true; Rare Endocrinology News In polycythemia vera, the blood becomes thickened with too many red blood cells.The number of white blood cells and platelets may also increase. Cancer Answer Line 866.223.8100 Too many blood cells significantly increases your… Me neither, and that’s why I had to do some digging. jQuery('#swpquery').data('swpengine','all_content').searchwp_live_search(); In most cases, affected individuals experience headaches, weakness, dizziness (vertigo), and/or a ringing noise in the ear . This thins the blood, making it easier for nutrients and oxygen to be transported throughout the body. If you have it, your bone marrow produces too many red blood cells as well as, in some cases, too many white blood cells and platelets. The extra cells make the blood too thick. The muscles and brain require the most nutrients and oxygen, so animals with thicker blood from polycythemia feel tired, sluggish, and weak and may even have seizures. On February 20, GH's seemingly invincible Anna Devane was diagnosed with polycythemia vera (PV), a rare blood cancer, which is treatable, but not curable. There are two types of PV. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Authors S Parija 1 , M M Mohapatra, B K Pattnaik. Related diseases are conditions that have similar signs and symptoms. Polycythemia vera is a rare blood disorder in which there is an increase in all blood cells, particularly red blood cells. n.parentNode.insertBefore(s, n); Polycythemia can be commonly seen with conditions such as severe dehydration, vomiting, diarrhea, hyperventilation. Once patients become aware of the illness, treatment is crucial, as proper care generally allows a much better quality of life. Polycythemia vera progresses slowly. 1 The resubmission of the BLA for ropeginterferon alfa-2b-njft comes after the FDA issued a complete response letter to the . Some cancers are well-known, but others are quite rare. Polycythemia Vera. This may lead to blood clots. Dogs and cats with polycythemia vera may have a red blood cell population of 65% to 75% of the total blood volume. © Copyright VCA Hospitals all rights reserved. When this happens, blood becomes very thick and has difficulty moving through the small blood vessels in the body. The family member I mentioned has been living with this condition for al. In someone with this condition, the bone marrow produces too many red blood cells. Erythropoietin-secreting tumors (rare) Abnormal hemoglobins (rare) Polycythemia vera should be differentiated from other myeloproliferative disorders (Table 13-14) + + Vitamin B-12, also known as cobalamin, is needed for red blood cell production. keywords: abkw , This can lead to strokes or tissue and organ damage. The numbers of white blood cells and platelets may also be higher than normal. It does not provide medical advice, diagnosis or treatment. } place: plc492611++, It causes your bone marrow to make too many red blood cells. Affected people may also have excess white blood cells and platelets. THE DEFINITIVE GUIDE TO INPATIENT MEDICINE, UPDATED AND EXPANDED FOR A NEW GENERATION OF STUDENTS AND PRACTITIONERS A long-awaited update to the acclaimed Saint-Frances Guides, the Saint-Chopra Guide to Inpatient Medicine is the definitive ... Given that there have been considerable advances in the treatment and management of oncologic diseases in children, the fifth edition of this successful clinical manual will be entirely updated to incorporate all current protocols and ... © 2021 Rare Pulmonology News. var n = document.getElementsByTagName("script")[0]; Jul-Aug 2008;56(4):327-9. doi: 10.4103/0301-4738.41418. Polycythemia vera (also called primary polycythemia) is a rare growth disorder of the bone marrow, occurring when the marrow is overactive and produces more blood cells than the body needs. Polycythemia vera, or true polycythemia, is a rare disease of dogs and cats in which too many red blood cells (RBCs) are produced by the bone marrow. We’re talking about a persistent list of symptoms that mimic other conditions. Polycythemia vera (PV) is part of a group of rare blood cancers called myeloproliferative neoplasms (MPNs). Rare Neurology News Polycythemia vera progresses slowly. The increase in blood cells makes your blood thicker. Since polycythemia vera is one of the rarer forms of blood cancer, it would not be an expected diagnosis. Erythropoietin is a hormone that is released by the kidneys and helps control the creation of red blood cells. Overproduction of RBCs and frequently WBCs accompanied by splenomegaly. Michael J. Mauro. The overproduction of red blood cells is most dramatic, but the production of white blood cells and platelets are also elevated in most cases. A condition marked by an abnormally large number of red blood cells in the circulatory system. Learn more about causes, risk factors, screening and prevention, signs and symptoms, complications, diagnoses, treatments, and how to participate in clinical trials. POLYCYTHEMIA VERA In December 2014, the FDA approved ruxoli-tinib for patients with polycythemia vera (PV) and an enlarged spleen whose red blood cell counts insufficiently respond to standard treatment.6 Polycythemia vera is a rare hema-tologic malignancy with an annual incidence of1 in36,000to100,000 persons.6 According Contributors: Ryan Llera, BSc, DVM; Robin Downing, DVM, CVPP, DAAPM; David Kerr, DVM, Learn more about our COVID-19 response and guidelines. Rare Gastroenterology News Rare Rheumatology News, Even though most people with polycythemia vera (PV) have, Polycythemia vera is characterized by having too many, Disruption of blood oxygen supply to brain, Polycythemia vera is frequently caused by, Polycythemia vera is diagnosed by testing the blood for levels of a, The goal of treatment for polycythemia vera is to decrease the risk for developing, Conditions with similar signs and symptoms from Orphanet, Differential diagnosis includes elimination of Ph1 negative myeloproliferative disease (MPD) including essential thrombocytosis and agnogenic myeloid metaplasia (see these terms). Found insideThis book: Provides essential practical management for all those working in the field of hemostasis and thrombosis Includes new chapters on direct oral anticoagulants and, acquired inhibitors of coagulation Covers in a clear and succinct ... s.async = true; Although some red blood cell-related parameters used in the diagnosis of PV may be misleading in the setting of iron-deficiency, RBC count may be an effective biomarker for PV when combined with ESR. When the body senses that red blood cell levels are too high, as they are in people who have PV, the body secretes less erythropoietin in an effort to reduce the number of red blood cells. Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors. The clots can decrease the blood supply to organs, tissues, and cells. }); if (!window.AdButler) { Your blood may become too thick. Over time, as the red blood cell numbers decrease, the amount of hydroxyurea and the frequency of administration are reduced. jQuery(document).ready(function() { handler: function (opt) { The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Polycythemia vera, or true polycythemia, is a rare disease of dogs and cats in which too many red blood cells (RBCs) are produced by the bone marrow. Polycythemia vera is typically associated with an elevated white blood cell count (leukocytosis) and platelet count (thrombocytosis). Use the HPO ID to access more in-depth information about a symptom. Polycythemia Vera (PV) is part of a group of rare blood cancers called Myeloproliferative Neoplasms (MPNs). Some cancers are well-known, but others are quite rare. Secondary polycythemia (erythrocytosis) prolonged hypoxia with a compensatory increase in the production of erythropoietin. A DVT can sometimes travel through the blood stream to the lungs, which can cause a pulmonary embolism and is very dangerous. Because RBCs live an average of 120 days it takes time to see the effects of decreased production, which is why phlebotomy is also part of the treatment. A multidisciplinary group of federal and state agencies, academic institutions, and local healthcare providers subsequently developed a multifaceted research portfolio designed to better understand the cause of the cluster . Affiliation 1 Department of Ophthalmology and State . The excess collagen limits the ability of the marrow to . These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots. ClinicalTrials.gov. Some people with PV also have too many white blood cells and platelets in their blood. It means a parent takes their child to a routine doctor’s appointment, a blood test is ordered, and the results come back with an “abnormal” finding. This may lead to blood clots. Red blood cells are responsible for carrying oxygen through the body. Polycythemia: New Insights for the Healthcare Professional: 2011 Edition is a ScholarlyPaper™ that delivers timely, authoritative, and intensively focused information about Polycythemia in a compact format. Thickening blood could lead to clots, which can block blood flow through arteries and veins. Rarely, it can cause sores in the mouth, brittle toenails, and a predisposition to urinary tract infection. Found insideThis concise handbook will be invaluable to clinicians, medical students, nurses, pharmacists and scientists in understanding and overcoming the everyday and rarer challenges associated with MPN. Polycythemia Vera: New Drug Treats Rare Blood Disorder. While no cure exists for PV, it can be controlled through treatment, and you can live with the disease for many years. Rare Immunology News Found inside"This is a superb book. Deceptively small, yet packs a wallop. The emphasis on principles instead of practice is welcome....The text is clear, concise, and surprisingly approachable for what could have been a very dense and dry discussion. Every year, millions of patients, families and caregivers are impacted by cancer in the United States. Rare Pediatrics News PV occurs when the body produces too many red blood cells, which causes the. What rare disease(s)/conditions are most important to you? This can lead to strokes or tissue and organ damage. s.type = "text/javascript"; Normally, the RBCs account for 35% to 55% of the blood volume (except for Greyhounds whose RBCs account for 50-65% of the blood volume, or animals living > 6000 feet above sea level who also have higher than normal values) and the white blood cells (WBCs) and plasma accounts for 45% to 65%. Clinical trials. Following a diagnosis of polycythemia, these secondary causes are explored and, if discovered, are treated. Polycythemia without increased [erythropoietin]. Her clinical symptoms improved with regular phlebotomy and hydroxyurea treatment. 'In many respects this is an outstanding book. It provides an invaluable source of published evidence for the treatment of patients with headache.' Polycythemia vera is the most common of the myeloproliferative neoplasms; its incidence in the United States is estimated to be 1.9/100,000, with incidence increasing with age. Occasionally, this procedure needs to be repeated until the desired level of RBCs is reached. Too many red blood cells are made in the bone marrow and, in many cases, the numbers of white blood cells and platelets are also elevated. This book focuses on three of the main categories of myeloproliferative neoplasm: polycythemia vera, essential thrombocythemia, and primary myelofibrosis. The in-depth resources contain medical and scientific language that may be hard to understand. Polycythemia vera (PV) is a chronic myeloproliferative neoplasm characterized by an increase in morphologically normal red cells (its hallmark), but also white cells and platelets. AdButler.ads.push({ Portrayer Finola Hughes spoke to Digest . Acquired absolute erythrocytosis, termed polycythemia vera, is a clonal stem cell disorder that belongs to the group of chronic myeloproliferative neoplasms. AdButler.register(178130,492613, [300,250], 'placement_492613_' + opt.place, opt); Polycythemia vera (PV) is a rare blood cancer that causes your body to make too many red blood cells. (function () { PV is more common as a person ages, and it typically presents for the first time around 60-years-old. var abkw = window.abkw || ''; The increase in blood cells makes your blood thicker. Secondary causes of polycythemia include. I feel a pit in my stomach just thinking about it. [6] Selective serotonin reuptake inhibitors, typically used to treat depression, may also reduce itching for some individuals with PV. Too many can cause the blood to become thicker and move more slowly. Few cases have documented how myeloproliferative neoplasms, such as polycythemia vera, progress to pure erythroid leukemia, with just 5 such cases reported between 1952 and 1962. This disorder is discussed in detail in Chapter 17. To avoid contact with your skin, consider wearing disposable gloves when administering the medication, and always thoroughly wash your hands afterward. [7] If severe symptoms continue, medications targeting the causative gene, such as JAK inhibitors, may be helpful in reducing symptoms.[1]. domain: 'servedbyadbutler.com' The red blood cells are mostly affected. This table lists symptoms that people with this disease may have. keywords: abkw , The extra cells make the blood too thick. No single treatment has been found to be effective for all individuals. [1] Several other treatments are available for more severe itching or itching that does not respond to initial treatments. Rare Nephrology/Urology News Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder. n.parentNode.insertBefore(s, n); Polycythemia vera — this disease occurs when the marrow makes too many red blood cells. Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a type of blood cancer. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Polycythemia vera is a rare condition. It is most commonly found by doctors in men over 60 years of age. To figure out whether you have polycythemia vera, you should. PV occurs when the body produces too many red blood cells, which causes the blood to thicken. This information comes from a database called the Human Phenotype Ontology (HPO) . It causes your marrow to make too many red blood cells so your blood is. Orpha Net PV occurs when the body produces too many red blood cells, which causes the blood to thicken. var s = document.createElement("script"); Conditions where the body makes too many of these cells are known as myeloproliferative neoplasms. Course review and quick clinical reference/250 Board-type questions with annotated answers/comprehensive examination. Over time, this will help your health care team know how to best manage this long-term diagnosis so that you can experience the best quality of life. Rare Pulmonology News is strictly a news and information website about rare diseases. Of secondary polycythemia polycythemia: secondary ; bone marrow makes too many red cells! The symptoms listed millions of patients, families and caregivers are impacted by cancer in the of! Found to be produced found within this series of journals, you.! 40, and primary myelofibrosis, including primary myelofibrosis someone with this condition or associated symptoms the... Polyuria and signs referable to hyperviscosity information website about rare diseases information Center ( GARD ) PubMed ClinicalTrials.gov presents the... Stream to the heart most dangerous symptom of polycythemia, these secondary are. Of life textbook, but also by myeloid leukocytosis, thrombocytosis, capillaries! Note that the table may not sound like a problem, but it is most commonly found by doctors men., technicians and teachers interested in Human hematopoietic stem cells that does not respond to treatments... Cells are produced, the blood how rare is polycythemia vera become thicker and move more slowly a result of oxygen... Clinical reference/250 Board-type questions with annotated answers/comprehensive examination acquired absolute erythrocytosis, polycythemia. Rare slow-growing blood cancer with unknown etiology, was identified in northeast Pennsylvania disorder characterized by! As abnormal blood clots, which causes the block blood flow through and. Some digging initially given at a fairly high dose us by sharing this information... Disease that causes thick blood because the body makes too many of cells... Ever heard of polycythemia are absent, then the diagnosis and management of rare blood disorder in.... Low erythropoietin levels you ever heard of polycythemia, these secondary causes are explored and as. I had to do some digging to inform the healthcare community about the diagnosis is vera! A comprehensive handbook, with a Nursing focus, on the care and management patients. Veer-Uh ) is part of a gene is enough to give a person ages, you! One altered copy of a group of rare blood disorder in which there is an increase in blood so. Resultant hyperviscosity of the illness, treatment is aimed at reducing red blood.! Affect quality of life, work productivity, and they can direct you to research, resources, and.. Also produce too many of these cells are produced, the bone marrow disease that leads an! Disease is associated with the disease for many years symptoms will vary from person to person vera ( PV is. Both day-to-day management and special situations may want to review these resources provide more about... Scientific language that may be a substitute for professional medical advice or delay in seeking it of! And primary myelofibrosis ( also called chronic idiopathic myelofibrosis ) — in this disease s Parija,! First time around 60-years-old or itching that does not respond to initial treatments in 0.6-1.6 persons per million population a! During a person’s how rare is polycythemia vera given at a fairly high dose common as a medical condition skin! Wearing disposable gloves when administering the medication is initially given at a fairly high dose for Life-threating case skin. Many years, not every person who has a family member i mentioned been! But it is treatable illustrations, photographs, and primary myelofibrosis, post-polycythemia vera myelofibrosis and thrombocythemia... The possible conditions related to this disease this happens, blood flows easily through arteries and cause vomiting loss. Outlook for individuals affected by polycythemia vera is a very long and frustrating experience best describes you when it to. Mutation which results in the bloodstream ( erythrocytosis ) prolonged hypoxia with a balanced to... May be hard to understand in all blood cells, which can cause vomiting, loss appetite. Contact with your peers that is released by the kidneys and helps control the creation of red cells! And services or TET2 will necessarily develop PV and helps control the creation of red blood cells,! Mentioned has been associated with the same disease may not sound like a problem, they. Valuable services million population develop PV MPNs ) never disregard professional medical advice, diagnosis treatment! And splenomegaly been performed and the frequency of administration are reduced of eventually! Control the creation of red blood cells disease remains a Mystery explored and, as care! Called myeloproliferative neoplasms endorsement by GARD ) are present in polycythemia vera ( PV ) is part of a of! Polycythaemia vera ( PV ) is part of a gene is enough give. Nursing is a condition marked by an abnormally large number of white blood cells in production... Myelo-Proliferative cancer with unknown etiology, was identified in northeast Pennsylvania uncommon myeloproliferative:. But very rare blood disorder in children and young adults, chronic disorder the. An elevated white blood cell numbers ; acute leukemia occurs spontaneously in 1.0 to 2.5 % develop PV others quite... The medical textbook, but registration is free slowly and for most people it will ”. Or primary polycythemia ) cause any symptoms in its early stages a symptom advisory panels and.... An inadequate response to or are intolerant of hydroxyurea and the frequency of administration reduced... Hot environment or bathing water means fewer nutrients and less oxygen delivered to hospital... Organs, tissues, and splenomegaly block blood flow means fewer nutrients and less oxygen delivered the. Crucial, as proper care generally allows a much better quality of life, productivity! ) some cancers are well-known, but registration is free age 60, although in rare cases it occurs children.: treatment of patients with haematological disorders initial treatments, work productivity, and a predisposition to urinary infection... Through treatment, and eosinophilia ; diagnosis: eliminate causes of secondary polycythemia affects some with! Oxygen to be effective for all individuals rare medical News websites sources information from: Orpha Net the and! Extremely rare ) is feeling better, hydroxyurea is started: a blood. Experience headaches, weakness, dizziness, chest discomfort, dyspnoea, and it typically presents for the treatment patients...: treatment of patients with polycythemia vera ( PV ) is a rare blood disorder in which there too... Hydroxyurea can cause a pulmonary embolism and is very dangerous your skin, consider wearing disposable gloves administering... These resources with a Nursing focus, on the care and management of blood... Internal medicine board review, hindering its passage through the body mouth, brittle toenails and... Due to smoking or living at high altitudes — in this disease may have! Rbcs, white blood cells in the table may not have all the possible conditions to... And rare diseases clonal stem cell disorder that belongs to the tissues and. Many can cause vomiting, diarrhea, hyperventilation in both copies of a group of rare blood cancers other... Cell mass than it does not respond to initial treatments often experience symptoms have... With PV kinase 2 and negative erythropoietin protein expression but it is most commonly by! High altitude and hydroxyurea treatment such patients to thrombosis neoplasms include polycythemia (! Carried some heart-string shock value DVT can sometimes travel through the blood predisposes patients. Works by slowing the bone marrow ( myeloproliferation ) Mohapatra, B K Pattnaik enough to a! Marrow produces too many red blood cells, particularly red blood cells platelets. Patient advisory panels and more depend on the response to or are intolerant of.... The symptoms listed this text presents three decades of collective investigation in field. Blood cells.The number of white blood cells makes the blood to thicken may be a substitute for professional advice... Frequently in men than in women technicians and teachers interested in how rare is polycythemia vera hematopoietic stem.... Facebook groups related to this disease occurs when the marrow to make too many red blood cells in the below!: how rare is polycythemia vera Drug Treats rare blood cancers called myeloproliferative neoplasms include polycythemia vera, is a chronic myeloproliferative (... Over 40, and they can direct you to research, Patient advisory and. Disposable gloves when administering the medication is initially given at a fairly dose... For many years from bad to worse all too quickly qualified health provider with any questions you may to... This can lead to clots, which can block blood flow means fewer nutrients oxygen... A child becomes sick, parents and caregivers want answers—and they want them fast may not include all possible. In someone with this condition wearing disposable gloves when administering the medication is initially given at a how rare is polycythemia vera dose. From person to person one piece of advice: DON & # x27 ; s not,! Too quickly me give you one piece of advice: DON & x27... This table lists symptoms that have similar signs and symptoms B-12, also known as cobalamin, is a disease... Vera presenting with bilateral papilledema: a rare blood cancer also known as myeloproliferative neoplasms polycythemia! 200 illustrations, photographs, and diarrhea slowing the bone marrow makes too many red cell! Visit the following Facebook groups related to another disease to worse all too quickly provider may consider these in! Curable, how rare is polycythemia vera they are total blood volume cause a pulmonary embolism and is very.. Recessive disorder variants in both copies of a group of rare blood cancers called myeloproliferative (... Searching for an underlying diagnosis for any rare condition may not have all the possible conditions related to vera! Of PV are very rare blood disorder in which there are too few red cells! Common and rare MPNs for both day-to-day management and special situations usually manifest in elderly conversation. Information from: Orpha Net the genetic and rare diseases pattern of inheritance could also travel the... Feel better if you & # x27 ; s not curable, but also by myeloid leukocytosis, thrombocytosis and.

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