Sarcoidosis And Me
National Sarcoidosis Organization
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Sarcoidosis is a inflammatory auto immune disease that can affect any organ by inflammation and cells forming together (granulomas) causing scaring. Most common diagnosis is pulmonary or lung involvement but recently cardiac involvement is making a huge appearance as it is now being diagnosed at an alarming rate.
Cardiac sarcoidosis can cause chest pain, palpitations, arrhythmias, fatigue and shortness of breath. Those are only some of the symptoms as with any cardiac involvement it can be much worse such as blockages, sick sinus syndrome or even cardiac arrest.
Cardiac sarcoidosis can be benign, incidentally discovered condition or a life threatening disorder. It was previously known that cardiac sarcoidosis or CS only affected about 5% of the people diagnosed with sarcoidosis but now it has become known that 20 – 30% of patients have cardiac involvement but do not know until autopsy.
When you are diagnosed with sarcoidosis in any organ you should always be fully screened for further involvement in other organs as it is known to be a multi systemic disease that will affect more than one organ at one time. A good start to the screening process is get an EKG done even if you have no symptoms at the time of screening. This will allow you to have a base for further tests and you will be able to recognize any abnormalities in this test on your follow ups. If you have symptoms such as arrhythmias or palpitations then you should be seen by a cardiologist who will most likely have you wear a holter monitor and do further testing.
The inflammation associated with cardiac sarcoidosis can damage virtually any part of the heart, including the electrical system, muscle, valves, arteries and surrounding tissues such as the pericardium. This causing heart rhythm disorders, heart failure, coronary disease or pericardial disease.
Diagnosis is challenging as it presents itself in such a broad way with different symptoms and is hard to detect with only one test. There are no guidelines to diagnosing CS but a cardiac MRI or PET scan are the most used and least invasive ways to see the involvement. For a confirmation a biopsy which is invasive and has its risks may be preformed.
Treatment is very controversial since you want to treat the inflammation as well as symptoms. Corticosteriods are the most common approach along with a combination of other medications that may be necessary. Some may also require a pacemaker or difibrillator depending on their circumstances.
There are many options out there for resources and support as you come to understand what to be aware of for cardiac involvement as well as if you have been diagnosed you will need support from others and information. You can find much of this information in the resources at National Sarcoidosis Organizations website as well as Inspire online support offers a great resource for communicating with others who also have similar symptoms.
If you have cardiac sarcoidosis we would love to hear how you were diagnosed and how you are being treated.