idiopathic anaphylaxis information center

a resource for people with ia and other mast cell disorders

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Why this site?

Original drawing of mast cell by Candace Van Auken, based on microphotographs of Ann Dvorak

I've created this Web site to share the information I find and articles I write that are related to mast cells, basophils, and mast cell-related diseases.

There's much high quality information available to people who have more common diseases — like diabetes or arthritis — but it can be difficult for people who have idiopathic anaphylaxis (IA) or mastocytosis ("masto") — or what some clinicians are calling mast cell activation syndome (MCAS) or mast cell activation disorder (MCAD) — to find information. And it's even harder for them to find in-depth information that is written in language they can understand.

I hope to provide a reliable resource that contains carefully researched and written material.

I do not see this site as attempting to replace, in any way, the role of a physician or specialist. What I hope to do is to help patients understand more than their busy doctors have time to explain. Understanding, for example, exactly what is actually happening inside a person who is experiencing anaphylaxis can help both that person and his or her friends or family know when to give an EpiPen or make a call to 911.

Fear and confusion do not assist a patient in crisis, and if I can do anything to help lessen those feelings, this Web site will prove itself to be a worthwhile endeavor.

Why am I calling this the "Idiopathic Anaphylaxis Information Center" rather than the "Mast Cell-Related Diseases Center"? There are two reasons for that:

First of all, there is extremely little available information relating to IA. While there are two non-profit organizations that were originally founded for people with mastocytosis and their families, there's nothing comparable for those of us with IA.

(Note: The Mastocytosis Society's charter includes IA as well as mastocytosis, but unless a person with IA understands the connections between IA and mastocytosis, they are unlikely to find their way to that organization.)

Second, I'm only one person, and I have to start somewhere. My plan is to attempt to cover topics related to IA as comprehensively as possible, and then if there's sufficient interest, I may later expand the site to cover information specific to mastocytosis and MCAS/MCAD.

Since much of the information related to IA is also relevant to people with other mast cell-related diseases, the site will, hopefully, be useful to a variety of people.

It feels rather quixotic to be doing this all by myself, and if there is anyone out there who is moved to help out in any way, please contact me. Even if you just want to say "Hi," or "That was useful," or "Hey, you screwed this up," or "I have access to a medical library and can get articles for you," or "Here's a few bucks to help pay for your medical journal subscriptions," I'd be happy to hear from you.

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Page last updated: January 17, 2012

 
All information contained in this site is one layperson's interpretation of medical journal articles, textbooks, seminars, presentations, and other materials. Nothing that is stated here should carry more weight than the informed and considered opinions of your own highly trained and qualified medical caregivers. The author of this site is not a doctor and has absolutely no authority to prescribe or diagnose.

The idiopathic anaphylaxis information center: A resource for people with IA and other mast cell disorders
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