April Sarcoidosis Awareness Month 2023 - Stand up for Sarc
Lesa Pinker
Cardiac Sarc Heartsavers
In November of 2022 I was given a diagnosis of a condition that I'd never heard of before: cardiac sarcoidosis. There's a really good chance you've never heard of it either!
From Once Upon a Time: Sarcoidosis for Beginners: "Sarcoidosis is an inflammatory disease. It is an immune system disorder, characterized by an over-active immune system. It is often incorrectly labelled as auto-immune, however, unlike auto-immune disease, where the immune system mistakes healthy tissue as a foreign invader and launches an attack, in sarcoidosis, the immune system responds to a threat such as a toxin, a virus, or bacteria, but then fails to stand down when the threat is gone. Since the immune system cells no longer have a purpose, they cluster and form granulomas, and those granulomas create inflammation, interfering with regular organ function. Left untreated, this can create fibrosis (scarring) in the affected organ."
They call sarcoidosis a "snowflake disease" because it is different for each person. While the marjority of people develop sarcoidosis in their lungs, mine is in my heart and causes arrhythmias that can be life threatening. I now live with an ICD (a pacemaker device that can also deliver a shock if I have a life-threatening arrhythmia), and have drug therapies to help get the inflammation under control. While I am grateful that I live in a time with medical interventions like this, there is much that is unknown about sarcoidosis. Many people go years without a proper diagnosis, and in the case of cardiac sarc, many are only diagnosed after they die from a cardiac event. Because it is a rare disease, getting good treatment can be difficult for many, and there is just so much more that needs to be learned about the disease’s causes and treatments.
There are approximately 1.2 million people worldwide who wake up each day and face the challenges of living with this rare disease.
This April, the sarcoidosis community is taking a stand and Standing up for Sarc! The sarcoidosis community will be raising awareness by Standing up for Sarc all month long in ways that will help increase understanding of the disease, accelerate research, and support those living with the physical and mental effects sarcoidosis can have on so many people from all over the world.
I have taken the pledge for Sarcoidosis Awareness Month and will be Standing up for Sarc by joining Steps for Sarc!
We hope you will join us this month to help achieve our goals by:
1. Making a donation to our fundraising page.
2. Taking the pledge to Stand up for Sarc!
3. Joining our team to create a movement during April and beyond!
Let's get together and Stand up for Sarc!
Thank you!
Click here for more information on sarcoidosis and the Foundation for Sarcoidosis Research.
Lesa
From Once Upon a Time: Sarcoidosis for Beginners: "Sarcoidosis is an inflammatory disease. It is an immune system disorder, characterized by an over-active immune system. It is often incorrectly labelled as auto-immune, however, unlike auto-immune disease, where the immune system mistakes healthy tissue as a foreign invader and launches an attack, in sarcoidosis, the immune system responds to a threat such as a toxin, a virus, or bacteria, but then fails to stand down when the threat is gone. Since the immune system cells no longer have a purpose, they cluster and form granulomas, and those granulomas create inflammation, interfering with regular organ function. Left untreated, this can create fibrosis (scarring) in the affected organ."
They call sarcoidosis a "snowflake disease" because it is different for each person. While the marjority of people develop sarcoidosis in their lungs, mine is in my heart and causes arrhythmias that can be life threatening. I now live with an ICD (a pacemaker device that can also deliver a shock if I have a life-threatening arrhythmia), and have drug therapies to help get the inflammation under control. While I am grateful that I live in a time with medical interventions like this, there is much that is unknown about sarcoidosis. Many people go years without a proper diagnosis, and in the case of cardiac sarc, many are only diagnosed after they die from a cardiac event. Because it is a rare disease, getting good treatment can be difficult for many, and there is just so much more that needs to be learned about the disease’s causes and treatments.
There are approximately 1.2 million people worldwide who wake up each day and face the challenges of living with this rare disease.
This April, the sarcoidosis community is taking a stand and Standing up for Sarc! The sarcoidosis community will be raising awareness by Standing up for Sarc all month long in ways that will help increase understanding of the disease, accelerate research, and support those living with the physical and mental effects sarcoidosis can have on so many people from all over the world.
I have taken the pledge for Sarcoidosis Awareness Month and will be Standing up for Sarc by joining Steps for Sarc!
We hope you will join us this month to help achieve our goals by:
1. Making a donation to our fundraising page.
2. Taking the pledge to Stand up for Sarc!
3. Joining our team to create a movement during April and beyond!
Let's get together and Stand up for Sarc!
Thank you!
Click here for more information on sarcoidosis and the Foundation for Sarcoidosis Research.
Lesa
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