1. HAE Links A non profit Organization dedicated to those families that are touched by a rare blood disease known as hereditary angioedema. http://www.hereditaryangioedema.com/

Clinical Trial Database Now Available Hereditary Angioedema - C1 Inhibitor Deficiency Welcome to the United States Hereditary Angioedema Association’s website. Hereditary Angioedema (HAE) is a rare disorder that results from a genetic deficiency of the blood-based protein C1 inhibitor . HAE patients experience attacks of edema (swelling) in the hands, face, feet, abdomen, and/or throat (airway). Swelling that involves the throat can close the airway and cause death by suffocation . Abdominal attacks often result in severe pain and intense vomiting serious enough to require hospitalization for pain management and IV fluids. Anyone with a history of swelling attacks should obtain a thorough work-up from a specialist. In our experience, specialists in Allergy/Immunology have the background and training necessary to diagnose the cause of chronic swelling. Because HAE is very rare, most patients with edema symptoms will receive a diagnosis that points to other conditions. As noted on this website’s Angioedema Table , there are many possible causes for persistent swelling. It is important to get a correct diagnosis because treatments vary depending on what is causing the edema. Our

2. EMedicine - Angioedema, Hereditary : Article By Warren R Heymann, MD An in dept look at hereditary angioedema beginning with an introduction, clinical features, differentials, work up, treatment, medication and follow up. http://www.emedicine.com/derm/topic24.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Dermatology Allergy And Immunology Angioedema, Hereditary Last Updated: August 16, 2004 Rate this Article Email to a Colleague Synonyms and related keywords: hereditary angioedema, HAE, C1-INH, C1 inhibitor, swelling of the skin AUTHOR INFORMATION Section 1 of 9 Author Information Introduction Clinical Differentials ... Bibliography Author: Warren R Heymann, MD , Head, Division of Dermatology, Professor, Department of Internal Medicine, University of Medicine and Dentistry of New Jersey Warren R Heymann, MD, is a member of the following medical societies: American Academy of Dermatology American Society of Dermatopathology , and Society for Investigative Dermatology Editor(s): Robert A Schwartz, MD, MPH , Professor and Head, Dermatology, Professor of Pathology, Pediatrics, Medicine, and Preventive Medicine and Community Health, UMDNJ-New Jersey Medical School; Michael J Wells, MD

3. MedlinePlus Medical Encyclopedia: Hereditary Angioedema A definition of hereditary angioedema along with a look at the causes, incidence and risk factors. http://www.nlm.nih.gov/medlineplus/ency/article/001456.htm

@import url(/medlineplus/images/advanced.css); Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Hereditary angioedema Contents of this page: Illustrations Definition Causes, incidence, and risk factors Symptoms ... Prevention Illustrations Antibodies Definition Return to top Hereditary angioedema is an inherited abnormality of the immune system that causes swelling, particularly of the face, and abdominal cramping. Also see angioedema Causes, incidence, and risk factors Return to top Hereditary angioedema is an inherited disorder. It is caused by low levels or improper function of a protein called C1 inhibitor . This, in turn, affects blood vessels. People with hereditary angioedema can develop rapid swelling of the hands, feet, limbs, face, intestinal tract, or airway (larynx or trachea). Unlike an allergic reaction , there is usually no itching or hives . Swelling of the gut can cause intestinal cramping. If swelling closes the airway, it can be fatal. Attacks of swelling can become more severe in late childhood and adolescence. There is usually a family history of the condition, but this may only reported to descendants as an unexpected, sudden, and premature death of a parent, aunt, uncle, or grandparent.

4. United States Hereditary Angioedema Association A non profit Organization dedicated to those families that are touched by a rare blood disease known as hereditary angioedema http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

5. United States Hereditary Angioedema Association Information Concerning A Rare Blood Disease Called hereditary angioedema. http://www.hereditaryangioedema.com/bork.html

Professor Konrad Bork, who many of us might remember from the last conference in Baltimore, has been frustrated to hear of the recent deaths in our HAE community. It was with this thought in mind, that he worked with HAE Association President, Anthony Castaldo to prepare the following letter to the Journal of the American Medical Association. We thought that the HAE patient community would like to read what the good Doctor and Mr. Castaldo had to say on our behalf. Flexibility in Regulatory Approaches Needed to Avoid More Deaths by Asphyxiation in Hereditary Angioedema To the Editor : It is with great sadness that we report four recent, completely avoidable deaths by asphyxiation of US patients suffering from the rare, genetic disease known as Hereditary Angioedema (HAE). In one of these cases, a 12-year-old female died in her father’s arms as she was being rushed to the hospital. HAE attacks are caused by a deficiency in the serine protease inhibitor, C1 inhibitor, and are characterized by the recurrent and unpredictable swelling of the extremities, face, bowel wall, and upper airway. Abdominal attacks are debilitating and bring severe crampy pain, vomiting, and diarrhea. Moreover, as proven by the tragic deaths noted above, laryngeal edema is a life threatening medical emergency that can close the airway and cause asphyxiation.

6. Angioedema A website on hereditary angioedema The hereditary angioedema Association Home Page. Top of page Table of Contents http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

7. Health And Medical Information Produced By Doctors - MedicineNet.com A brief article about hereditary angioedema. http://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=3721

8. EMedicine - Angioedema, Hereditary Article By Warren R Heymann, MD An in dept look at hereditary angioedema beginning with an introduction, clinical features, differentials, work up, treatment, medication and follow http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

9. EMedicine - Angioedema : Article By Nedra Dodds, MD hereditary angioedema. This type of angioedema is characterized by recurrent selflimited attacks involving the skin, subcutaneous tissue, upper respiratory http://www.emedicine.com/emerg/topic32.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Emergency Medicine Allergy And Immunology Angioedema Last Updated: April 4, 2005 Rate this Article Email to a Colleague Synonyms and related keywords: anaphylaxis allergies allergic reaction urticaria ... edema , tongue swelling, angioneurotic edema , atrophedema, Bannister disease, Bannister's disease, circumscribed edema , giant hives, giant urticaria, urticaria gigans, urticaria gigantea, Milton disease, Milton's disease, periodic edema, Quinckedisease, Quincke's disease, Quincke edema, Quincke's edema, urticaria tuberosa, dysphonia dysphagia respiratory distress , complete airway obstruction, giant wheals allergic angioedema idiopathic angioedema urticarial eruptions , hymenoptera envenomations, food allergies chronic urticaria emotional stress Helicobacter pylori ... leukemia , arthralgias, palpable purpura AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Nedra Dodds, MD

10. Reader's Digest - Rd.com hereditary angioedema, a general discussion, alternate names and resources. http://www.rd.com/common/nav/index.jhtml?articleId=8612968

11. Drug Hard To Mask It has been used medicinally with prescription, in oral form, to treat a rare disorder called hereditary angioedema, which can cause swelling of http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. MedlinePlus Medical Encyclopedia Hereditary Angioedema A definition of hereditary angioedema along with a look at the causes, incidence and risk factors. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. AllRefer Health - Hereditary Angioedema hereditary angioedema information center covers causes, prevention, symptoms, diagnosis, treatment, incidence, risk factors, signs, tests, support groups, http://health.allrefer.com/health/hereditary-angioedema-info.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia Web health.allrefer.com You are here : AllRefer.com Health Hereditary Angioedema Hereditary Angioedema Definition Prevention Treatment Expectations or Prognosis ... Go To Main Page Definition Hereditary angioedema is an inherited abnormality of the immune system that causes swelling , particularly of the face, and abdominal cramping. Also, see angioedema Antibodies Hereditary angioedema is an inherited disorder. It is caused by the absence of a protein called C1 inhibitor (or a defect in this protein), which in turn effects blood vessels. People with hereditary angioedema can develop rapid swelling of the hands, feet, limbs, face, intestinal tract, or airway (larynx or trachea).

14. EMedicine - C1 Esterase Deficiency : Article By Michael Elnicki, MD Article from eMedicine.com by Michael Elnicki MD on C1 Esterase Deficiency also known as hereditary angioedema (HAE). http://www.emedicine.com/med/topic420.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Medicine, Ob/Gyn, Psychiatry, and Surgery Allergy And Immunology C1 Esterase Deficiency Last Updated: June 9, 2004 Rate this Article Email to a Colleague Synonyms and related keywords: hereditary angioedema, HAE, oedema, complement deficiency induced angioedema, complement deficiency-induced angioedema, angioneurotic edema, acquired angioedema, AAE, complement component 1 inhibitor deficiency, laryngeal edema, C-1 esterase deficiency AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Michael Elnicki, MD , Section Chief, Department of Internal Medicine, University of Pittsburgh Medical Center Coauthor(s): Paris T Mansmann, MD , Director of Allergy and Clinical Immunology, Associate Professor, Department of Internal Medicine, Section of Rheumatology, Allergy and Immunology, West Virginia University School of Medicine Michael Elnicki, MD, is a member of the following medical societies:

15. Arch Intern Med Abstract Hereditary Angioedema A Broad Review Review. . Topic Collection Alerts hereditary angioedema A Broad Review for Clinicians Ugochukwu C. Nzeako, MD, MPH ; Evangelo Frigas, MD http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

16. AllRefer Health - Hereditary Angioedema Information hereditary angioedema information center covers definition, Overview, Causes, Risk Factors, Symptoms Signs, Diagnosis Tests, Treatment, http://health.allrefer.com/health/hereditary-angioedema.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia Web health.allrefer.com You are here : AllRefer.com Health Hereditary Angioedema Definition Hereditary angioedema is an inherited abnormality of the immune system that causes swelling , particularly of the face, and abdominal cramping. Also, see angioedema Antibodies Jump to a section Definition Prevention Treatment Expectations or Prognosis ... Calling Your Health Care Provider Topics that might be of interest to you Angioedema Hives C1 Inhibiting Factor C4 Level ... Complement Other Topics Allergic Reactions Breathing Difficulty Itching Swelling From Our Sponsors: A.D.A.M., Inc. is accredited by URAC, also known as the American Accreditation HealthCare Commission (www.urac.org). URAC's

17. Canadian Hereditary Angioedema Society http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. NORD - National Organization For Rare Disorders, Inc. hereditary angioedema is a rare inherited disorder characterized by recurrent The most common form of the disorder is hereditary angioedema type I, http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Angioedema, H

19. EMedicine Health - Hives And Angioedema Overview This article does not refer to an uncommon and more serious condition, hereditary angioedema. hereditary angioedema involves swelling over the http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. NORD - National Organization For Rare Disorders, Inc. hereditary angioedema. Baxter Healthcare manufactured a C1 inhibitor protein, extracted from human blood and heat-sterilized, for HAE in Europe. http://www.rarediseases.org/nord/research/hereditary_angioedema

Database Subscriptions Many libraries, schools, universities, and hospitals subscribe to NORD's Rare Disease Database for unlimited access to reports on more than 1,150 diseases. Index of Rare Diseases This is the list of diseases currently covered in the Rare Disease Database. Rare Disease Database Search this database for reports on more than 1,150 diseases. View sample report Index of Organizations This is the list of organizations in NORD's Organizational Database. Organizational Database Read about more than 2,000 patient organizations and other sources of help. NORD's Washington Office Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC. Research Hereditary Angioedema Baxter Healthcare manufactured a C-1 inhibitor protein, extracted from human blood and heat-sterilized, for HAE in Europe. However, this treatment, which was administered intravenously, is no longer available. Aventis now distributes a plasma-based product in Europe and is making it available on a limited basis in the United States. For information about obtaining the Aventis product, patients and physicians should contact the Immune Deficiency Foundation in Maryland: Immune Deficiency Foundation 40 West Chesapeake Avenue Suite 308 Towson, MD 21230

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