Marrowforums - MDS, Agent Orange and the VA

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- - MDS, Agent Orange and the VA (http://forums.marrowforums.org/showthread.php?t=1200)

Contact info - docs

Bob, I just registered on the site today and really like your style, etc. Can you provide me with contact info on those docs you name below?

I'm already VA rated at 80% for SFW and GSW's incl 30% PTSD. I recently filed a claim for Primary Anemia since MDS is not in the VA book and today got a letter from VA wanting supporting evidence from my doc. It may save us a lot of time if we can contact the four below to get supporting literature/statements on the connection between dioxin exposure and MDS.

Thanks,

Tommy Daniels
Savannah

Judy Karp, Director Adult Leukemia, John Hopkins
David Steensma, Associate Professor of Medicine, Harvard Medical
Mikkael Sekeres, Director Leukemia Program, Cleveland Clinic
Ruben Mesa, Director of the Acute and Chronic Leukemias Program, Mayo Clinic Arizona

jkarp2@jhmi.edu
david_steensma@dfci.harvard.edu
sekerem@ccf.org
david_steensma@dfci.harvard.edu

Back in Florida next week. Will have a great deal to report back from my trip to DC and the AA/MDSIF conference.:eek:

mesa.ruben@mayo.edu,

Quote:

Originally Posted by Bob Macfarlane (Post 13599)

Bob - How did the meetings at congress go yesterday?

Washington meetings

We got at least one co-sponsor for HR12-30 from Florida. I do believe that the other three Representatives will also sign on. John Huber and I meet face to face with Chairman Bob Filner today at the House VA Committee. When I make it back to South Florida next week I will post a complete reply on the conference and my meetings with the VA Committees in both the House and Senate.

Quote:

Originally Posted by Neil Cuadra (Post 13607)

Bob - How did the meetings at congress go yesterday?

I may be a little slow but for 20 yrs I did my job and retired in 82. Since then I have been dx first with type 2 Diabetes, then Heart Problems, and two years ago "Pre Lukemia" now they say MDS unclassified... My question is: I was never exposed to Chemical Agents that I know of. Never spent time in Viet Nam.. the closet was Guam.. Do I put in a claim to the VA to see if it can be determine if any of my assignments exposed me to chemical hazards... Thanks GT

MDS but not in 'Nam

AO was also used in Korea on the DMZ. Was in the water at LeJune, etc. Send me a list of your assignments and I'll see if I can help you out.

Quote:

Originally Posted by Bob Macfarlane (Post 13664)

AO was also used in Korea on the DMZ. Was in the water at LeJune, etc. Send me a list of your assignments and I'll see if I can help you out.

As I did not work in a hazardous career fields, I never thought much about getting sick later in life. 1966/69 Truax Fld Wisc.. 69/72 Athenia AB Greece, 72/73 Eglin AFB, Fla.. 73/76 Anderson AFB Guam.. 76/77 Osan AFB Korea.. 77/80 Williams AFB, Az... 80/82 Langley AFB Va., & Civil Service 83/90 Carswell AFB, Tx.. I don't think I missed a day of duty for any illiness even a cold and those little bottles of GI cough medicine took care of those occassional coughs and sore throats......Being retired never thought much about filing with VA.. Thanks for any info.. GT

You might find this interesting reading:

http://www.vva.org/veteran/1007/ao_spraying.html

My private doctor's first letter in three parts

Tim's second letter for me

Dr. Judith Karp, Director Adult Leukemia, John Hopkins

Dr. Ruben Mesa, Director Acute and Chronic Leukemia, Mayo Clinic (Arizona)

Dr. Mikkael Sekeres, Director Myelodysplastic Syndromes Program, Cleveland Clinic

Dr. David Steensma, Professor, Harvard Medical

Agent Orange, Exposure to Agent Orange and Birth Defects in Children or Grandchildren

We lost our adopted son, Garrett, in 1997, to complications from a bone marrow transplant he underwent when his marrow became too fibrous for the conventional treatments of that time. He was being seen by military doctors and by Dr. Neal Young at NIH - where he underwent one round of ATG in December 1995. After a horrible year in 1996 Dr. Young told him that the only option for him was a transplant. We found his biological Father - who was a half-match - and went ahead with the transplant. Garrett developed an Aspergillus fungal infection and died 2 months into the transplant procedure.

Garrett was born in 1968 near Bangkok, Thailand, to a younf Thai woman (17 or 18 years old at the time) and was fathered by an Air Force member who had served on and off in Thailand from 1966 to 1971. He was not a crew member of the fleet that delivered Agent Orange - but in that environment his exposure may have been from other situations.

Garrett was brought to the United States in 1972 - at the age of 4 and travelled the US for 2 years in search of his biological father. He became a beloved part of our family at the age of 8.

My question is - Garrett's biological son, Dillon, who is 16 this month, is now exhibiting traits of Marfans Syndrome. I have read through the VA site and although they are considering a lot of conditions as connected with exposure to Agent Orange, Marfans is one of those conditions specifically called out as not being one of them.

We are not looking for health care from the VA - BUT - we want all the information we can get because Dillon's family is meeting with a geneticist on August 23rd at a hospital here in Texas.

I will read all of the links you have provided here - and understand that the VA is looking at a lot of links - but am also looking at short cuts for the information gathering process.

Thank you!

Morning Stephanie,

I have not been ignoring your request. Everyday I try to dedicate an hour or so to researching Marfan's. I've also seen the document produced by the VA that they name "Marfan's" as an inherited disease and specifically exclude it from the birth defects list from Vietnam.

Certainly you have by this time found the National Marfan Foundation ( Marfans.org ). The also have a Teen Site that Dillon can communicate with at ( teennetwork@marfan.org - http://marfan.org/teenspace/ )

I will continue to search. Never forget that there is one Great Physician you should be going before for help.

Bob

Response to question about Marfans

Bob,

Thanks so much for these resources. You confirmed what we had learned. If you happen on anything else we would appreciate it - but we can do the work and will do it - so that you can focus on the other things you are doing.

Stephanie

My letter of today 08/05/2010

Good morning,

I know that the VA is currently in the process of making a decision on my claim (fourth or fifth time?) and I fully expect they will give me zero percent again because there is no code for Myelodysplastic Syndrome or is there?

Attached is a letter from a friend, fellow Vietnam veteran and fellow MDS patient. The difference between us is that the VA has denied that AO "in his case" caused MDS and found that "in my case" AO caused my MDS.

The randomness of the VA's decisions turns my stomach. I bet the VA is also upset, that with all of their delaying, denying, that I haven't just gone off and died.

To the point. I am given zero percent because MDS is nothing more than anemia and Larry is denied VA insurance because MDS is an incurable form of leukemia. Allow me to remind you again that leukemia is VA Code 7703 - 100% whenever being treated and I will never be in remission. MDS is incurable, therefore, it is total and permanent.

Perhaps one or the other made a mistake in their decision. The insurance folks are wrong and Larry should get insurance? The disability folks are wrong and I should receive almost six years of retroactive 100% disability?

Truth is that MDS is leukemia and is caused by exposure to Agent Orange. Larry should be 100% T&P and be GIVEN life insurance because of his disability.

If I may spell it out once more, for insurance purposes the VA is making medical decisions. For disability the VA is making financial decisions.

Veteran's Affairs certainly should not be allowed to have it both ways.

Mary Ellen would you please show this, email and letter, to Senator Akaka. Talib would you please make sure the Representative Filner sees this? Talib, if you would be so kind, thank Rep. Filner for his most encouraging letter please. Ellis run this by your friend?

It is attached in PDF format.

No matter how this turns out for me, I will continue to fight, until my last breath, for my fellow Vietnam veterans with bone marrow failure disease. I have a few Vietnam veterans on my BCC list that have received 100% T&P but are unwilling to step into the fray for fear of retaliation by the VA. Shame on them or shame on the VA?

I will continue to fight because it is the RIGHT thing to do!

"It is foolish and wrong to mourn the men who died.
Rather we should thank God that such men lived."
- George S. Patton, Jr.

"A simple way to take measure of a country is to look at how many want in... And how many want out."

Only two defining forces have ever offered to die for you:

1. Jesus Christ
2. The American G. I.

One died for your soul, the other for your freedom.

A veteran - whether active duty, retired, or national guard or reserve - is someone who, at one point in their life, wrote a blank check made payable to "The United States of America", for an amount of "up to and including my life."

Bob Macfarlane
Disabled Vietnam veteran and proud to have been allowed to serve this great nation...
In the service of a Jewish carpenter -- a relationship, not a religion
John 14:6 / Mathew 10:32-33

I do not know why it did not attach.

Perhaps OLD TIMES DISEASE in addition to diabetes and MDS?

IOM Meeting November 4, 2010

Have been working for the past month or so on my statement for the Institute of Medicine meeting in Chicago on the 4th of November.

The outcome of that effort has been an 18 page document on how Agent Orange is behind our MDS. A further outcome has been my beginning to fully understand that Agent Orange might not be the sole cause of our MDS. The first written page of the statement will explain that to you.

There are 40+ footnotes which when expanded are between 200-300 pages of documentation. I will be burning them to CD starting tomorrow afternoon and if you want to email me a snail address I will send you the total package.

Email me at AirAmrka@aol.com and anyone that ask how much they cost will not be allowed to have one.

You will need access to Microsoft Office 2007 or later to use the document and open the links.

My Viet Nam vet friend gets VA benefits for his type 2 diabetes. I have recently heard from a VA doctor that guys now get benefits for Parkinson's Disease. I guess they have bigger lobbies, and we only have you. Thanks for your hard work.

Institute of Medicine

Just back from testimony before the IOM / Agent Orange Committee in Chicago. Personal opinion? It went VERY, VERY well and I would not be surprised to see the IOM issue a statement by January, 2011 declaring that MDS should be considered presumptive to AO exposure and should be rated as LEUKEMIA.

Attached is the PDF version of my statement. There are 90+ references and If you would like a copy on CD email me your snail address to AirAmrka@aol.com

My honest impression was that the committee could not believe that the Department of Veterans' Affairs was so arbitrary in their decision making in the face of scientific evidence.

PDF did not upload because I have exceeded my quota. Go ahead and email me and I'll send you the complete package. Video of the three presentations about MDS will be on my Facebook page by tomorrow.

Your Facebook page

Bob,

Can you invite me to your Facebook page. I am on Facebook as Stephanie Dillon Hamm or Stephanie Hamm.

Thanks for all of you efforts. I will email you for a copy of your testimony.

Agent Orange and trisomy 8 mosaic

Hello Bob, I found you on another web site and I am seeking any help that you can give me , please. My son was born in 1976 with trisomy 8 syndrome. I have recently been reading that there might be a link to his dad serving in Vietnam, 1968-1970 where he was exposed to AO. Our son has so many serious health problems,if AO is the reason for his suffering , I need to bring a case against the goverment on behalf of my son. Do you know if there is a class action open?
Any help will be appreciated. Respectfully yours.