Thursday, July 26, 2012

Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...

A post from my personal blog:

Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...: My daughter is 11 months old today.  She is a  gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy ...

Saturday, July 21, 2012

Find Your POTS Cause: The Wide World of Mast Cells (Sourced)

The proposed relationship between POTS and MCAD.
MCAD and Mastocytosis are a confusing set of diseases and conditions.  What aren't  these days?   I'd like to post about a nice, simple, straight forward and easy to understand condition for once, but alas, MCAD is exactly the opposite.

 What are Mast Cells?

Mast cells are cells of the immune system that are found around blood vessels in the skin, gastrointestinal tract, respiratory tract, and genitourinary tract, and are highly associated with nerves. They release chemicals including histamine that are very irritating and cause itching, swelling, and fluid leakage from cells.

"Mast cells are known to be the primary responders in allergic reactions, orchestrating strong responses to minute amounts of allergens. Several recent observations indicate that they may also have a key role in coordinating the early phases of autoimmune diseases, particularly those involving auto-antibodies."

What is MCAD?
As desribed technically, "Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. In most cases of mast cell activation disease, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications. Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation."

What does that mean?  In simpler terms - MCAD is a collection of hard to diagnose (because they often don't show up in standard blood work) conditions related to "mast cells behaving badly."  Mast cells are almost everywhere in the body.  When they break down, it is called degranulation, and in MCAD the mast cells do this in a seemingly random way; releasing histamine that the body reacts to, causing all kinds of skin reactions, anaphylaxis (throat closing/itching/blood pressure drops, etc...), and even causing heart rate fluctuations and shortness of breath in some.

MCAD is also called MCA, or MCAS (the "S" stands for syndrome), and the current definitions by the WHO (World Health Organization) are being debated.  Currently because of the WHO definitions of MCAD, it is very hard to get a solid diagnosis, and it is an under-diagnosed and misunderstood condition by many physicians. 

Saturday, July 14, 2012

Webinar Topic Suggestions? Top Researchers Participating!

Hello everyone....

As you know we are starting up our new non profit, Dysautonomia SOS, and we are working with NDRF (National Dysautonomia Research Foundation) on a few projects.

One of these is a series of webinars with some of the top researchers in the field of Dysautonomia from Vanderbilt and Mayo (among others).

What topics would you like to see covered?   We are collecting broad topics, and even specific questions if you have them to get an idea of what is needed by the patient community.

Please comment here, message me, or email me with your suggestions.  More details to come!


And on a side note - we are SO excited about the amazing team that has come together for Dysautonomia SOS!  We have a team of amazing volunteers, Medical Advisers, and all kinds of people contributing to make this a successful and impacting organization - not just in our region, but everywhere.  

If you are interested in sharing your story, volunteering, or getting involved in any way let me know.  

Have a great day!