Amyloidosis Patient Information SiteAmyloidosis Patient Information Site Profile

Title:- Amyloidosis Patient Information SiteAmyloidosis Patient Information Site

Description:The UK National Amyloidosis Centre's official patient site, providing comprehensive, authoritative information for amyloidosis patients and their families.


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- Amyloidosis Patient Information SiteAmyloidosis Patient Information Site Amyloidosis Patient Information Site Skip to content Home Forum Essentials Introduction to Amyloidosis Nomenclature – what’s in a name? About the National Amyloidosis Centre Patient and public involvement AL Amyloidosis Understanding AL Amyloidosis Symptoms and Signs of AL Amyloidosis Investigations for AL Amyloidosis Treatment of AL Amyloidosis Troubleshooting for patients with AL Amyloidosis AA Amyloidosis Introduction to AA Amyloidosis Diagnosis of AA amyloidosis Treatment of AA Amyloidosis Hereditary Amyloidosis ATTR Amyloidosis Cardiac Amyloidosis About Cardiac Amyloidosis Diagnosis of Cardiac Amyloidosis Treatment of Cardiac Amyloidosis Other Types of Amyloidosis ALECT2 amyloidosis AB2M Amyloidosis Localised Amyloidosis Diagnosis of Amyloidosis Introduction to diagnosis of Amyloidosis Tissue biopsy Genetic testing SAP scintigraphy Diagnosis of Cardiac Amyloidosis Fever Syndromes The Periodic Fever Service at the National Amyloidosis Centre The inherited periodic fever syndromes – general information The inherited fever syndromes – information on each syndrome Familial Mediterranean Fever – FMF Colchicine in pregnancy TNF receptor associated periodic syndrome (TRAPS) Mevalonate Kinase Deficiency (MKD), also known as Hyperimmunoglobulin D syndrome and periodic fever syndrome (HIDS) Cryopyrin-Associated Periodic Syndrome (CAPS) NALP12 associated periodic fever syndrome Deficiency of the IL-1 receptor antagonist (DIRA) Pyogenic sterile arthritis, pyoderma gangrenosum and acne (PAPA) syndrome Blau Syndrome Majeed Syndrome GPP/DITRA JMP/CANDLE syndrome Auto-inflammatory diseases of unknown cause The CAPS National Treatment Service Amyloid associated diseases Trials Amyloidosis Trials AL Amyloidosis trials ATTR Amyloidosis trials AA Amyloidosis trial Phase I trial of CPHPC + anti-SAP antibodies Contact FAQs Print PDF The National Amyloidosis Centre has developed this website as a public service to provide patients and their family and friends with a comprehensive, accurate and up to date resource on all types of amyloidosis. We welcome your feedback. Throughout this website, explanations of technical terms are provided. To see these explanations, hover over (or touch if you are viewing on a touch screen) the words with dashed underlining, for example: “amyloid“. Much information about amyloidosis is available on the internet. Some of it is alarming and much of it can be confusing. There are many different types of amyloidosis. Each type has different causes, different symptoms and different treatments. In order to understand the disease you need to understand which type is present. We suggest that first time visitors to this website start by reading the essentials section, then read the section about the type of amyloidosis that you or your relative has. The different types include AL , AA , ATTR (which may be either hereditary or non-hereditary) and other, rarer hereditary types. All of these may be “systemic” which means that they affect many different parts of the body. Amyloidosis may also be “local” or “localised” which means that just a single organ or part of the body is affected. Local amyloidosis is usually of AL type and is a very different disease to systemic amyloidosis. Local amyloidosis may require no treatment or may be completely curable. Although there is no cure for systemic amyloidosis at present there are several treatments which can be extremely helpful and prolong life for many years. If you have been diagnosed with amyloidosis, or if a family member or friend has the condition, we hope that you will find all the information you need here. The website is here to help you no matter what your stage of the disease. New treatments are being researched and introduced more actively than ever before and are increasingly effective. There are good reasons for optimism and it is important to remember that you are not alone. More about the NAC More about Public and Patient Involvement at the NAC Essential information Contact us The National Amyloidosis Centre gratefully acknowledges the financial support of the following companies: IONIS Pharmaceuticals, Carlsbad, California, US Alnylam Pharmaceuticals, Cambridge, Massachusetts, US Kidney tissue, viewed using specialist laboratory techniques to pick up amyloid deposits (stained with Congo Red dye and viewed under cross-polarised light) Reproduced with permission from Int J Biochem Cell Biol, Dec 2003;35:12;1608-1613 Structure of the serum amyloid P component (SAP) molecule, reproduced from Nature 367, 338 – 345 (27 January 1994). SAP is found in all types of amyloid deposits. General administration, web design and medical communications provided by: Dr Miriam Vered, Vered Consulting FAQs Read our FAQs – for answers to the most frequently asked questions about amyloidosis. Patient Forum Visit our online forum – a place where patients with amyloidosis, family, friends and carers from all over the UK can connect, communicate and help each other. Local Support Groups Some patients with amyloidosis are interested in organising local support group meetings. Please be in touch if you are interested in joining. Patient Information leaflets These are available as downloadable PDFs on the UCL website. Working with patients, families and the public to improve outcomes in amyloidosis The information on this website is not a substitute for professional medical care. Patients should always consult a doctor regarding concerns about their health. For enquiries about your healthcare please ask your physicians to contact the physicians at the NAC. Whois