Representing The 80 Percent of all cases of people with angioedema, we are determined to find, “right answers”, for idiopathic angioedema, are throwing in the kitchen sink with regards to searching for a definitive cure, and want to share with you what we are learning. |
| Below are some of the more distinctive articles we’ve come across in our research efforts.
May this information serve to bring you closer to finding the answers you need in identifying and managing your future care. We love you!!! |
Donate today and make history with us as we work to attain our official 501c3 status as well as create the first ever foundation for people with idiopathic angioedema and bradykinin mediated angioedema!
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“Considered a crystalline alcohol, xylitol is actually a derivative of xylose — a crystalline aldose sugar that is not digestible. Xylose, not xylitol, is naturally found in nature as it is mostly obtained from birch bark. Yet, just because something is “natural” doesn’t mean that it is good for you.” Dr. Axe
Many people with #IdiopathicAngioedema and #MastCellActivationDisorders tend to have systemic dry mouth, either from the conditions, themselves, from the high doses of antihistamines or from any other sort of medication. Many use Xylitol, a sugar alcohol, in one form or another (Xylimelts, Biotene, and more), in order to try to keep saliva properly forming and flowing through the mouth. However, are are some thing we think you should know about the effects of Xylitol on the body.
“QOTW – “What about those of us with idiopathic angioedema? Can you do something for those of us who do not have HAE?” |
“Idiopathic” is a word that no one likes to hear in clinical medicine. The word comes from Greek roots and literally means “one’s own suffering”. When used in the medical field it means a condition without a known or identifiable cause. Unfortunately, there are many medical conditions that fit into this category and angioedema is no exception. A large percentage of people with angioedema have this idiopathic form. It’s important with any angioedema condition to take a careful medical history and review records to look for any possible underlying reasons for the angioedema. Sometimes lab testing is indicated to exclude suspected causes. However, even with extensive testing, we often can’t pinpoint any specific reason for recurrent angioedema in some individuals. In these cases, it’s usually important to shift from ineffectively searching for a cause to finding a management plan that will treat or control the symptoms.” Dr. Marc Riedl
“First known case of angioedema associated with Crohn’s disease… ” |
A 46-year-old female patient with terminal ileum Crohn’s disease and ankylosing spondylitis presented with recurrent angioedema and urticaria. Investigations ruled out hereditary angioedema, and environmental or food allergen triggers.”
“The objective of the Hereditary Angioedema Burden of Illness Study in Europe was to assess the real-world experience of hereditary angioedema (HAE) from the patient perspective.” |
“The Human Health and Performance (HH&P) Medical and Clinical teams provide specialty medical care as well as occupational and industrial health services to the civil servant, contractor and astronaut populations at Johnson Space Center (JSC) and its satellite facilities. |
“If you have allergies, many parts of this story will probably be familiar to you. I’m writing it down just to get it out there, and in case it’s helpful for people to read what someone else has been through. It’s an incredibly long story, so I wouldn’t bother reading if you are in a rush.” |
“Lab tests specific to mast cell activation for suspected MCAS patients should include serum tryptase, serum chromogranin A, plasma histamine, chilled plasma PGD2, stat chilled plasma heparin, chilled urine for PGD2, PGF2a and n-methylhistamine. .” |
“The study of the effects of the environment upon the individual is now feasible due to new technology developed in the construction of environmental units.1,,32. |
Our observations reveal that individual or multiple organs may be involved. The brain is the target organ in only a subset of chemically sensitive patients, and its involvement should not be confused with psychosomatic disease.”
“People are suffering severe allergic reactions (including anaphylaxis) to meat products as tick bites cause the human body to mount an immune response against the mammalian carbohydrate “alpha-gal”. |
This unusual condition has so far been identified in Australia and in the United States, however, the numbers of those affected is substantial and appears to be increasing.”
Candida organisms commonly colonize the human gastrointestinal tract as a component of the resident microbiota. |
Their presence is generally benign. Recent studies, however, show that high level Candidacolonization is associated with several diseases of the gastrointestinal tract.
Nigella sativa has been used as traditional medicine for centuries. |
The crude oil and thymoquinone (TQ) extracted from its seeds and oil are effective against many diseases like cancer, cardiovascular complications, diabetes, asthma, kidney disease etc. It is effective against cancer in blood system, lung, kidney, liver, prostate, breast, cervix, skin with much safety.
“A Russian scientist claims to have found the fountain of youth by injecting himself with 3.5 million year old bacteria found in the Siberian permafrost.”
According to Anatoli Brouchkov, he no longer gets sick and is now stronger than ever.”
Question of The Week. “What about those of us with idiopathic angioedema? Can you do something for those of us who do not have HAE?” | US HAEA Angioedema Center at UCSD. May 10, 2016. Dr. Sandra Christiansen, Dr. Bruce Zuraw and Dr. Marc Riedl. 10 May 2016.
Angioedema associated with Crohn’s disease: Response to biologics. World J Gastroenterol. 2012 Sep 14; 18(34): 4787–4790. Published online 2012 Sep 14. doi: 10.3748/wjg.v18.i34.4787. Flavio Habal and Vivian Huang. Copyright ©2012 Baishideng Publishing Group Co., Limited. All rights reserved.
Burden of Illness in Hereditary Angioedema: A Conceptual Model | Clinical Report: Anette BYGUM1 , Emel AYGÖREN-PÜRSÜN2 , Kathleen BEUSTERIEN3 , Emily HAUTAMAKI4 , Zlatko SISIC5 , Suzanne WAIT6 , Henrik B. BOYSEN7 and Teresa CABALLERO8 1 HAE Centre Denmark, Department of Dermatology and Allergy Centre, Odense University Hospital, Odense, Denmark, 2 Department of Children and Adolescents, Angioedema Centre, University Hospital Frankfurt, Goethe University, Frankfurt, Germany, 3 Outcomes Research Strategies in Health, Washington, DC, USA 4 Oxford Outcomes Inc., an ICON plc company, Bethesda, USA, 5 ViroPharma, Chatsworth House, Maidenhead, 6 SHW Health Ltd, London, UK, 7 HAEi – International Patient Organization for C1 Inhibitor Deficiencies, Skanderborg, Denmark, and 8 Allergy Department, Hospital La Paz Institute for Health Research (IdiPaz), Biomedical Research Network on Rare Diseases U754 (CIBERER), University Hospital La Paz, Madrid, Spain; Acta Derm Venereol 2015; 95: 706–710
NASA’s Human Health and Performance Clinic Ideal for Angioedema Patients | NASA | 23 February 2015
Corn Allergy Girl | Observations and reference from an unwilling hippie. Severe and sensitive corn allergy, gluten free, soy free, MCS, H-EDS, dysautonomia, multiple food allergies. | Possibility of allergic reactions to corn-derived | Where’s The Corn in Non=Food Products | sugars: http://www.ncbi.nlm.nih.gov/pubmed/1808842- “Probable anaphylactic reaction to corn-derived dextrose solution.” Possibility of allergic reactions to corn starch:http://europepmc.org/abstract/MED/1696439/– Annals of Allergy: “Anaphylaxis due to cornstarch surgical glove powder.” | Possiblity of allergic reactions to corn-based alcohol: http://www.karger.com/Article/Abstract/24107– International Archives of Allergy & Immunology: “Corn Allergens: IgE Antibody Reactivity and Cross–Reactivity with Rice, Soy, and Peanut” (Abstract states that corn proteins are soluble in alcohol.)
Symptom Management & Mast Cell Degranulation Triggers | Mastocytosis Society of Canada: 1) Sever, A; Sibbald,G; D’Arville, C: Thousand Faces of Mastocytosis: Mistaken Medical Diagnoses, Patient Suffering & Gender Implications University of Toronto Press: 7. 2009. [Open Access] | 2) Burrall, B; Halpern, G.M; Huntley, A: Medical Progress: Chronic Urticaria West J Med March 1990;152:268-276
Multiple Chemical Sensitivities: A Workshop. | Considerations for the Diagnosis of Chemical Sensitivity: William J. Rea Alfred R. Johnson, Gerald H. Ross, Joel R. Butler, Ervin J. Fenyves, Bertie Griffiths, and John Laseter.
Mammalian meat allergy caused by tick bites. | Bio Med Central | The Open Access Publisher: Bug Bitten
Inflammation and gastrointestinal Candida colonization. | Carol A. Kumamoto*
Anticancer Activities of Nigella Sativa (Black Cumin). | Afr J Tradit Complement Altern Med. 2011; 8(5 Suppl): 226–232. | Published online 2011 Jul 3. doi: 10.4314/ajtcam.v8i5S.10 | Md Asaduzzaman Khan,1Han-chun Chen,1Mousumi Tania,1 and Dian-zheng Zhang1,2 | 1Department of Biochemistry, School of Biological Science and Technology, Central South University, Changsha, Hunan 410013, P R China | 2Department of Biochemistry/Molecular Biology, Philadelphia College of Osteopathic Medicine, Philadelphia, PA 19131, USA | Corresponding author. | *E-mail:Email: nc.ude.usc.liam@nuhcnahnehc, Email: moc.oohay@jmbnahkdasa
Russian scientist injects himself with 3.5 million year old bacteria for eternal youth.by Kristine Lofgren. Inhabitat. http://inhabitat.com/russian-scientist-injects-himself-with-3-5-million-year-old-bacteria-for-eternal-youth/?newgallery=true
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