Well, only a few days are left in the first ever Dysautonomia Awareness Month! There is still a lot going on, we will end the month with a bang. Here is a quick break down of 2 cool remaining events.
Friday, October 26, 2012
Sunday, October 21, 2012
Join the Social Media Dysautonomia Directory!
Hey folks! Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard
of, but supposedly a bunch of people actually have! We just have to
find each other!
We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.
One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.
To register, you can click THIS LINK, or fill out the form below:
_______________________________________________________
The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website.
Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:
Love to you all, and thank you for the continued support!
Claire
We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.
One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.
To register, you can click THIS LINK, or fill out the form below:
The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website.
Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:
Love to you all, and thank you for the continued support!
Claire
Friday, September 28, 2012
POTS: The Basics
I'm re-upping this, as we are almost done with the new nonprofit website, and most of my new "material" will be headed over there. This a POTS 101 type summary, hopefully easy to understand and useful :) ---Claire
POTS: An Overview
Postural Tachycardia Syndrome
POTS: The BasicsFind links to in depth information and resources for POTSies at on our Dysautonomia SOS website (under construction).
POTS is short for Postural Orthostatic Tachycardia Syndrome. It is referred to by some physicians and researchers as Postural Tachycardia Syndrome, or just Postural Tachycardia. It is a type of Orthostatic Intolerance, and also a type of Dysautonomia. Let’s break down what that name means:
Postural means relating to posture, or a change in position.
Orthostatic means relating to, or caused by erect posture (standing up).
Tachycardia refers to a rapid heart rate.
Syndrome means a collection of symptoms, and not a disease. Technically, a syndrome is defined as a group of signs and symptoms that occur together and characterize a particular abnormality.
So, POTS is a collection of symptoms that result from a heart rate increase when standing up. When a person with POTS stands up, the heart pumps faster to help keep the blood pressure up, and try to help the blood in their body reach their brain and other vital organs. The body of a person with POTS does not respond to gravity the same way a non-POTS person does.
The majority of POTS patients are female, of child bearing age, and under 35. There are thought to be anywhere from 500,000 to millions of people in the US with POTS and other forms of Orthostatic Intolerance. There are no solid published statistics or data at this time, these are estimates from the major research centers that treat POTS.
Friday, September 7, 2012
Sunday, September 2, 2012
FIND YOUR POTS CAUSE: Mitochondrial Disease 101 (Guest Post by Hannah!)
"Mitochondrial cytopathies are a diverse group of inherited and
acquired disorders that result in inadequate energy production. They
can be caused by inheritable genetic mutations, acquired somatic
mutations, exposure to toxins (including some prescription medications),
and the aging process itself." (1)
MITOCHONDRIAL DISEASE 101
by Hannah
The mitochondria are the “power-plants” of the cell—they
provide most of the energy a cell needs to function. There are mitochondria in
every single cell except for red blood cells. Mitochondrial disease, or ‘mito’
is a genetic and generally progressive problem with the mitochondria. (There is
also a concept of “mitochondrial dysfunction”, where there is no gene mutation
but the mitochondria don’t work well because of some outside force, such as
certain medications or diseases.) The spectrum of severity of mitochondrial
disease varies widely, from a baby with Leigh’s Disease who passes away before
his first birthday, to the very serious MNGIE, to a woman who gets excessively fatigued and weak as she
ages.
 |
| Cells have multiple mitochondrian that power the cell through by converting ADP to ATP. |
Sunday, August 26, 2012
Hydration, Salt, and Peeing: The Renin-Angiotensin-Aldosterone System
I guess I should use the technical name for peeing in this title - urination - but it's a catchier to say pee. Because that's what many of us POTS folks do (and various other forms of Dysautonomia), we pee A LOT.
Why is this? And why the heck do we have to eat so much salt?
Well, there is this thing called the
2. Angiotensin then undergoes a series of reactions that convert it to Angiotensin II (AII in the diagram below), which in turn stimulates the release of Aldosterone from the adrenal cortex.
3. Aldosterone is the main mineralocorticoid (steroid hormones that balance electrolytes) hormone secreted by the adrenal cortex, the principal biological activity of which is the regulation of electrolyte and water balance by promoting the retention of sodium (and, therefore, of water) and the excretion of potassium. In plain English - Aldosterone helps your kidneys retain salt, and therefor retain fluids, helping to keep blood volume and blood pressure up.
Here is a diagram of the entire system.
Well, there is this thing called the
Renin-Angiotensin-Aldosterone System.
It's a big deal. It takes place mainly in your kidneys and adrenal cortex, and affects your blood pressure directly. Lets break down the three components:
1. Renin is a protein (enzyme) released by special kidney cells when you have decreased salt (sodium levels) or low blood volume, and stimulates the formation of Angiotensin in blood and tissues.
2. Angiotensin then undergoes a series of reactions that convert it to Angiotensin II (AII in the diagram below), which in turn stimulates the release of Aldosterone from the adrenal cortex.
3. Aldosterone is the main mineralocorticoid (steroid hormones that balance electrolytes) hormone secreted by the adrenal cortex, the principal biological activity of which is the regulation of electrolyte and water balance by promoting the retention of sodium (and, therefore, of water) and the excretion of potassium. In plain English - Aldosterone helps your kidneys retain salt, and therefor retain fluids, helping to keep blood volume and blood pressure up.
Here is a diagram of the entire system.
Saturday, August 4, 2012
Choose to be Chronically VISIBLE
Alrighty. Time for an Op-ed. It may tick some people off.
I see much posting going on regarding INVISIBLE ILLNESS and spreading awareness by promoting the idea of an illness being invisible. This term has always bothered me, as I have mentioned before on this blog. It has the ring of victim/helplessness to me, and I tend to like things that are assertive, proponents for change, and action oriented.
I think the problem here is two fold:
1. There is no invisible illness, JUST IGNORANCE. What illness is truly visible? There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill." And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse.
2. People find their identity in the "invisible illness" movement, and use it as something to hide behind. NOT EVERYONE. I know that is probably not most people's conscious intention. Many are looking to find a way to spread awareness, which I commend. But is this how any of us want to be known? As invisible? Is this the best way to spread awareness?
What society sees are deformities and stereotypes. Not illness. They see something out of the ordinary and recognize something is "not right" with that person. This actually has nothing to do with if they are "ill" in some cases. Is an amputee ill? Maybe. Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons. This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change. We need to speak about our conditions by NAMING THEM, and being visible, not promoting an image that quite frankly can be a bit whiny sounding at times.
I think the problem here is two fold:
1. There is no invisible illness, JUST IGNORANCE. What illness is truly visible? There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill." And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse.
2. People find their identity in the "invisible illness" movement, and use it as something to hide behind. NOT EVERYONE. I know that is probably not most people's conscious intention. Many are looking to find a way to spread awareness, which I commend. But is this how any of us want to be known? As invisible? Is this the best way to spread awareness?
What society sees are deformities and stereotypes. Not illness. They see something out of the ordinary and recognize something is "not right" with that person. This actually has nothing to do with if they are "ill" in some cases. Is an amputee ill? Maybe. Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons. This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change. We need to speak about our conditions by NAMING THEM, and being visible, not promoting an image that quite frankly can be a bit whiny sounding at times.
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 ...
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. |
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!
THANK YOU!
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!
Claire
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!
THANK YOU!
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!
Claire
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