Sarcoidosis? Whats that?

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When my mom told me she was diagnosed with Sarcoidosis I had no idea what it was.  That was probably about 10 years ago and I’m still a little foggy about what it really is.


According to http://www.stopsarcoidosis.org/ : 

Sarcoidosis (pronounced SAR-COY-DOE-SIS) is a potentially fatal inflammatory disease that can appear in almost any organ in the body. Although the lungs are affected in more than 90% of patients, the disease often attacks the heart, eyes, central nervous system, liver and kidneys. Once thought rare, sarcoidosis is now known to be common and affects people worldwide. The cause remains unknown and THERE IS NO CURE.

Often, the effects of sarcoidosis in an organ are so mild that there are no symptoms and the organ continues to function well. Some symptoms could be: dry coughing, trouble breathing, wheezing, feeling tired or fatigued, itchy skin, irregular heart beat, anemia as well as many others like the ones listed here.  One or even a few symptoms alone wouldn’t make you think you really had something wrong.  That is why it is so important to get regular check ups and let your doctor know anything you have been feeling!


What causes Sarcoidosis?(From: http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm)

No one knows exactly what causes sarcoidosis, but it is probably due to a combination of factors. Some research suggests that bacteria, viruses or chemicals might trigger the disease. Although such triggers might not bother most people, it is possible that in someone with the right genetic predisposition they provoke the immune system to develop the inflammation associated with sarcoidosis.

The fact that a person is more likely to develop the disease if someone in his or her close family has the disease strongly suggests that genetics plays a role. Researchers have not discovered the genes for sarcoidosis yet, but it seems likely that more than one gene is involved.



I know at one point research was indicating that bat guano had a link to those with Sarcoidosis. Sure made us think back to all the caves ( Carlsbad caverns, Lurey caverns, Howe caverns we visited when I was growing up. My mom also grew up  down the block from some sort of factory and there has been a lot of discussion lately that perhaps they were dumping chemicals into the ground.  A few other people on the block also have rather rare diseases.  Two of her cousins also have Sarcoidosis which supports the theory that it is genetic.


My mom constantly has kidney stones that form from calcium . Calcium is probably the one thing most recommended to women over 50 – and she has to severely limit her intake of it! That is because Sarcoidosis can cause the body to overproduce vitamin D which allows the body to absorb too much calcium.  She can’t have any leafy green veggies either.  She often has multiple kidney stones at once that are too large to pass so she has to have them blasted. Five mm and smaller is considered passable but shes has them get as large as 9mm! I had one once and I don’t know how big it was, but for all the pain it caused it looked pretty damn small – like a grain of sand. I couldn’t imagine having multiple stones banging around that are physically too large to pass!  Her heart is also greatly affected.    Sarcoidosis messes up the electrical timing of her heart from about once a year sending in to A-Fib.  If it doesn’t fix itself in a day or so she has to have it shocked back into a normal rhythm. Sarcoidosis also causes 3 of the 4 valve’s in hear heart to leak “moderately to severe”.


I urge all of you to get a yearly physical, most insurance plans will cover it.  While you are there discuss anything you have been feeling lately with the doctor, even if you think it is insignificant. Also make sure you know as much as you can about your family history.  If you think you might forget something write yourself a list.  Everytime I go in for my physical or any other sort of check up I bring a list of any symptoms – even if I don’t actually feel “sick” as well as my family history.


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