Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Sat Oct 29, 2011, 08:43 PM
Jennifer M Jennifer M is offline
Member
 
Join Date: Oct 2011
Location: Florida (Panhandle, Gulf Coast)
Posts: 5
Question BP Oil Spill: Possible cause of AA & PNH??!!

Hello Everyone!

I'm a Newbie & my Wonderful & Very Brave Husband Chris was diagonised July 2011 w/Moderate AA & PNH. Because my Husband has Always been a "Health Nut" his entire life & has never been exposed to any known toxins that can cause these horrible disease(s), we cannnot help but wonder the timing of the BP Oil Spill Disaster & The Dangerous Dispersants used during the ongoing spill & the aftermath (By air & water). We live ON the Gulf Coast & we were both actually swimming in The Gulf of Mexico when the very first sightings of tar balls came ashore. The timing of his downward spriral of health to the final diagnosis just seems "To Fit" EXACTLY! His blood counts were otherwise normal before (from routine physicals & etc....). Does anyone from the Gulf Coast have a new diagnosis of AA, PNH or other Bone Marrow Failure diseases since the BP Oil Spill?

No, I am not an atty. Just a conerned wife that wants answers!

Peace, Love & Health to ALL!!
__________________
Jennifer: Loving & Hopeful Wife of Chris age 45. Diagnosed w/Moderate AA & PNH July 2011. "Watch & Wait"/Supportive Care.
Reply With Quote
  #2  
Old Sun Oct 30, 2011, 01:19 AM
mscrzy1 mscrzy1 is offline
Member
 
Join Date: Jan 2011
Location: California
Posts: 103
Sorry, I can't help you. From what I understand most cases of AA are idiopathic, but I did want to respond to forward the link for the AA conference online webinar where they discuss people who get AA and why.

http://live.blueskybroadcast.com/bsb...PIC-WHATWEKNOW
__________________
Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
Reply With Quote
  #3  
Old Sun Oct 30, 2011, 01:42 AM
Jennifer M Jennifer M is offline
Member
 
Join Date: Oct 2011
Location: Florida (Panhandle, Gulf Coast)
Posts: 5
Talking

Hi Angie,

Thanks so much for your reply & advice! It really helps when you feel that you are not alone! It means soooo much!

We have been informed that most cases are idiopathic. Yet, we just can't help but wonder the timing of the BP Oil Disaster & my husband's diagnosis.

I think I have seen the webinar you speak of. We will watch it again.

Sometimes we just are grasping for answers & want to know if others have experienced the same fate in our area with these unique circumstances. So, anyone from the Gulf Coast with a recently diagnosis of any form of Bone Marrow Failure, please make contact for support!

Peace & Recovery to ALL!
__________________
Jennifer: Loving & Hopeful Wife of Chris age 45. Diagnosed w/Moderate AA & PNH July 2011. "Watch & Wait"/Supportive Care.
Reply With Quote
  #4  
Old Sun Oct 30, 2011, 03:35 PM
mscrzy1 mscrzy1 is offline
Member
 
Join Date: Jan 2011
Location: California
Posts: 103
Yes, I completely understand where you are coming from. I remember after being originally dx, I was grasping for answers as well. At the time, I was working cleaning musical instruments for a local instrument store. They didn't provide gloves and I was too young and dumb to know any better at the time. We had the cleaning chemicals sent off for testing and everything, but still weren't able to directly determine that it was what caused my AA. For now, I've come to the conclusion that the chemicals may have weakened my marrow and I may have caught some random virus that just "broke the camel's back". I wish you luck in your search!!!
__________________
Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
Reply With Quote
  #5  
Old Sun Oct 30, 2011, 04:19 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Before we moved into our current home 8-1/2 years ago, the radon level tested about 100x the safe level. It was completely remediated before we moved in. When I was dx with MDS two years ago, tht was the first thing I thought of. We retested the house and it was still fine. I guess we'll never know the cause of my disease. I think it's human nature to want/need to know the why's.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #6  
Old Mon Oct 31, 2011, 02:51 PM
Dick S Dick S is offline
Member
 
Join Date: Jan 2008
Location: Florida
Posts: 189
Sometimes, probably most of the time, we never find out what caused our disease, we are just unlucky and get it. Now that I've got it, it's totally unimportant to me how, there's nothing I can do about it now. I'm pretty sure mine just came from plain old old age when the marrow gets smaller and smaller, tireder and tireder.
__________________
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
25 years after AA, now I've got AA and PNH squirrellypoo Tell Your Story 14 Fri Dec 14, 2018 11:52 AM
Cyclosporine after ATG for AA PNH Matt R Drugs and Drug Treatments 0 Fri Feb 27, 2015 04:59 PM
Two New PubMed Abstracts Regarding the Role of PNH in AA curlygirl AA 4 Thu Jan 2, 2014 01:51 AM
aa and pnh 3blankets AA 3 Fri Sep 27, 2013 09:46 PM


All times are GMT -4. The time now is 08:03 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org