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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Tue Jul 28, 2015, 12:36 PM
TLL414 TLL414 is offline
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Is there research on PNH and Toxic Chem?

Hello,

I am seeking research articles/papers/citations that show a possible link between exposure of toxic chemicals (namely Dioxin and Benzene) and acquired analytic anemia (PNH). I am a Vietnam Era veteran and been dx with 'stable' PNH in Jan/2014. My PNH still remains stable and my only meds prescribed so far was iron supplements and folic acid... so I am very grateful for that. My heart goes out to you who have and still are suffering from any of these Bone Marrow Diseases!

I have had significant exposure to Agent Orange during my Vietnam service (72-73) and even greater exposure to Benzene though my entire service years (70-74). I was a Jet Engine Mechanic in the USAF and my daily job duties put me at risk everyday. In addition all the military bases I was assigned to are now closed and deemed toxic Superfund cleanup sites, (Chanute AFB, IL, McConnell AFB, KS and George AFB, CA). I see on the MDS Marrow forum there is a lot of posts regarding AA and MDS and it relationship to toxic chemical exposure, but very little about PNH on this matter.

These diseases as you already know fall under the category of Bone Marrow Failure diseases... and it is a known fact Benzene damages cells in Bone Marrow... among other ailments. I have heard too much regarding Agent Orange (Dioxin) and it's effect on bone marrow dysfunction.

If you prefer to email me please feel free to do so at TLL414@aol.com, thank all of you who participate in my requests and on these forums!

Tom Lamb
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Old Tue Jul 28, 2015, 02:37 PM
Neil Cuadra Neil Cuadra is offline
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It's known that exposure to benzene, chloramphenicol, and other chemicals can lead to PNH, although the exact process may be less clear than the statistical correlation.

PNH involves a genetic mutation, and it may be that the mutation is already present but not symptomatic until the bone marrow is damaged (e.g., from chemical exposure), after which the defective cells gain a "competitive advantage" over normal cells, letting them proliferate and cause the symptoms of PNH.

Are you asking for the purposes of a V.A. claim? The issue has come up before, with evidence from a patient's medical records and statements from their personal physicians apparently carrying as much weight as the medical research literature.
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Old Tue Jul 28, 2015, 02:55 PM
TLL414 TLL414 is offline
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Thanks Neil... yes I am. I am currently 90% due to IHD, DMII, PTSD due to Agent Orange exposure. I was granted 100% IU T&P. The only reason I am considering a claim even if it was only rated 0% is so my wife would receive some benefit in the event of my death caused in part or whole of a compensated disability, including PNH. I wanted to gather whatever information I can and obtain an Independent Medical Opinion before pursuing my claim.

Even though my PNH is relatively stable, I have read regardless of clone size, I am acceptable to clots. If true... being relatively stable doesn't necessarily mean I am safe... I'm better than most though.

Thanks for your time moderating this forum... you do a great service to us all.
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Old Tue Jul 28, 2015, 04:08 PM
Neil Cuadra Neil Cuadra is offline
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Thrombosis (a blood clot) can occur with a clone size as small as 10%, and the risk increases with clone size.

Sources:
Thrombosis in paroxysmal nocturnal hemoglobinuria

Mechanisms and clinical implications of thrombosis in paroxysmal nocturnal hemoglobinuria
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Old Wed Jul 29, 2015, 03:44 PM
GoodDay5150 GoodDay5150 is offline
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Hi Tom, I was diag w/ PNH in Spring of 2011 and had a bmt later that year. I had PNH sympts for close to 10 yrs but mostly ignored them until I became so anemic that I made an appt for a doc check up, blood test etc etc. and got the ball rolling. I know that some research has shown that there may be a link to PNH in respect to chemical exposure, but I don't know how many academic studies have been done regarding the poss link. I will ask my PNH dr and assoc staff; they have a staff of abt 8 dr's so they deal w/ a lot of patients w/ all varieties of blood issues. As far as me and my history, other than cig smoking, my exposure to chems was limited to that of general household exposure. Home repair and re-model, some car repair and maint, etc etc. I was never in the military, and as I stated, my haz mat exposure was pretty limited. As far as my mthrs fam history is concerned, there is a high incident of cancer, at least one great uncle w/ leukemia, an older cousin, (I'm 46), who developed some kind of bone cancer after having throat cancer when she was in her late 50's etc etc. The grt uncle w leukemia did work w/ chems, the older cousin was a heavy smoker, some other relatives didn't take very good care of themselves, etc. PNH is so rare that some med experts would prob say that the subject group would be too small to be accurate or to conclude any common factors and so on. With that, PNH is usually diagnosed in early adulthood, 30-40's, like me. As I said, I will ask my doc and will look online as well. Good luck in your treatment. Mario
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