I lost my beloved son last year. I have heard a doctor comment that most of the people diagnosed with this disease are from the state of New York. Has anyone received information about location concentration? When my son was first diagnosed in 1999, some doctors thought the greatest consentration of diagnosed people was in Atlanta. I wonder if babies born in a certain year or specific location may have been subject to a tainted newborn treatment or medication.
I am so sorry about your son. I think we forget that this disease can kill. My prayers are with you and your family.
Years ago when we went to school (doctors and nurses) we were taught that sarcoidosis was concentrated in the Southeastern United States. Only people of African - American descent had this disease. That was about it, a blurb that now makes no sense. But health care providers who graduated in the 1940's - 1970's learned it and that is what they believed. When I was diagnosed in 2000 it was classified as a "very rare" disease. By 2003 it was being called "rare". Now you know just by the numbers on this website this is not a rare disease. Many of the people who worked close to ground zero in New York have been diagnosed So now I guess the concentration is there. For some reason there are concentrations seen in certain jobs also, Firefighters have a high incidence if sarcoid so maybe that made the New York clump even higher. It is just too much to fathom sometimes. But you have to understand that many healthcare workers don't always update their education on all points so what they learned a long time ago may still be what they believe.
God Bless,
Barb
I am so sorrry for the loss of your beloved son.
When you have doctors saying all the symptoms we have are not from Sarcoidosis,how can we trust their numbers to be correct on the number or the cause of deaths and concentrations from Sarcoidosis?
I know so many people in my community and the hospital where I work who have a secondary diagnosis of Sarcoidosis. Some have sleep apnea or asthma which is listed as the cause of death. A lot of people on this site have Fibromyalgia, I am no expert but don't you think that's suspect of something going on with the pain component of this disease? Yet many doctors have told me pain is not related to my Sarcoidosis.
So reporting the numbers is left to people who won't even listen to the patients who are actually going through this.. I have no faith in the reports on who has this and where it is concentrated. We on this site have disproved so many theories just by recording the symptoms we have as a group..
God Bless you and your Family.
I grew up in a heavly industry area in Michigan. I swear that all of the chemicals is the reason that I have Sarcoid along with many allergies.
I think its important to remmember that sarc is an auto-immune disease, our own immune system is attacking our organs when it shouldn't be. As such, I tend to think that we get sarc not from exposure to dusts or other simular hazards.
Personally, I think sarc is related to one of four areas .... (a) either the use or misuse of certain antibiotics, (some antibiotics were distributed with a mold in them, but not recalled years ago) (b) imunization shots that perhps we should have skipped, or (c) perhaps something reated to the amount of radio waves or EMF (ever increasing) or radon gas (found in basements) around us that effects some of us more than others by triggering our immune systems to overreact. (d) overworking ourselves, I have worked more 60+ hr work weeks than 40 hr weeks in my life time, that may trigger over active immune systems.
Something has to trigger our immune system to over react and attack our own otherwise healthy organs .... science doesn't know what it is yet, but my personal opinion is that it is not related to location or breathing realted hazards.
I lived in upper michigan in my youth, then AZ from 19-35, then WA state till recently. I was diagnosed with sarc last year but by researching my past medical records we determined I likley got it sometime around 2000 or 2001.
Also, I have 2 -1st cousins who have sarc as well so there does seem to be a genetic tie. One has had it >20 yrs, the other only about 5 yrs.
BUT ... I could be wrong. Thoughts?
God bless!
harmles2
this is what the nih says - my thoughts are pretty close to this - the individual may have a genetic predisposition to this type of disease, then comes into contact w/ a trigger of some sort:
"The cause of sarcoidosis is not known. And, there may be more than one thing that causes it.
Scientists think that sarcoidosis develops when your immune system responds to something in the environment (e.g., bacteria, viruses, dust, chemicals) or perhaps to your own body tissue (autoimmunity).
Normally, your immune system defends your body against things that it sees as foreign and harmful. It does this by sending special cells to the organs that are being affected by these things. These cells release chemicals that produce inflammation around the foreign substance or substances to isolate and destroy them.
In sarcoidosis, this inflammation remains and leads to the development of granulomas or lumps.
Scientists have not yet identified the specific substance or substances that trigger the immune system response in the first place. They also think that sarcoidosis develops only if you have inherited a certain combination of genes.
You can't catch sarcoidosis from someone who has it.
More research is needed to discover what causes sarcoidosis. "
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