I am the eldest daughter of a Vietnam War veteran who has been affected by agent orange. My father and I have both been diagnosed as carriers of Fragile X Tremor Ataxia Syndrome. Have you heard of any other Vets being affected by Fragile X Syndrome? My son actually has the syndrome and has quite severe developmental disabilities because of it. My sister and I have both had pretty bad health since we were teens - both of us having to have hysterectomies at 26-years-old because of fibroid tumors and severe endometriosis. We've all had thyroid issues, as well as my sister and I both being diagnosed with Fibromyalgia. My dad suffers from blindness, neuropathy, enlarged prostate, diabetes, and macrocytic anemia, as well as the Fragile X stuff.

My sister and I have been following identical medical paths since we were teens. First I am diagnosed with something and then she is diagnosed with the same exact thing. Seems to coincidental, considering my mother has never had health issues.

Any suggestions on where to look for help...the only connection the three of us have is Agent Orange....

Concerning Spinia Bifida, I have observed several letters of denial relating to the mother not being exposed to Agent Orange.

Here is the regulation:

September 5, 2006 VHA HANDBOOK 1302.013
7. SPECIAL HEALTH CARE BENEFITS FOR VIETNAM VETERANS’ CHILDREN BORN WITH SPINA BIFIDA (EXCEPT SPINA BIFIDA OCCULTA) a. Spina bifida (except spina bifida occulta) is presumptively recognized in the offspring of Vietnam veterans as due to herbicide exposure.
b. Title 38 United States Code (U.S.C.) Section 1803 states that VA must provide health care benefits for children of Vietnam veterans who are born with spina bifida or any disability that is associated with such condition. The term “child,” with respect to a Vietnam veteran, means a natural child of the Vietnam veteran, regardless of age or marital status, who was conceived after the date on which the veteran first entered the Republic of Vietnam during the Vietnam era between January 9, 1962 and May 7, 1975, inclusive.
NOTE: The term “Vietnam veteran” means a veteran who performed active military, naval, or air service in the Republic of Vietnam during the Vietnam era. The Veterans Benefits Act of 2003 extended these benefits to the natural children of veterans who served in Korea between September 1, 1967, and August 31, 1971, and who were exposed to certain herbicides during such service in or near the Korean Demilitarized Zone (DMZ). The spina bifida conditions covered apply with respect to all forms and manifestations of spina bifida except spina bifida occulta.
NOTE: For information about this program, access Web site http://www.vba.va.gov/bln/21/benefits/Herbicide/index.htm#bm03, or contact the VA spina bifida-birth defects Hotline at 1-888-820-1756.
8. SPECIAL HEALTH CARE BENEFITS FOR WOMEN VIETNAM VETERANS’ CHILDREN WITH BIRTH DEFECTS
a. In accordance with the mandate in 38 U.S.C. 1813, VA has identified the birth defects of children of women Vietnam veterans that:
(1) Are associated with Vietnam service; and
(2) Result in permanent physical or mental disability.
b. A list of those diseases is available at http://www.vba.va.gov/bln/21/Topics/Women/Birth.htm. For further details concerning these benefits, contact the VA spina bifida /birth defects hotline at 1-888-820-1756.

My note: the following was added by VA after the regulation was established:
a. In accordance with the mandate in 38 U.S.C. 1813, VA has identified the birth defects of children of women Vietnam veterans...

[color:RED]Concerning Spinia Bifida, I have observed several letters of denial relating to the mother not being exposed to Agent Orange.

Here is the regulation:

September 5, 2006 VHA HANDBOOK 1302.013
7. SPECIAL HEALTH CARE BENEFITS FOR VIETNAM VETERANS’ CHILDREN BORN WITH SPINA BIFIDA (EXCEPT SPINA BIFIDA OCCULTA) a. Spina bifida (except spina bifida occulta) is presumptively recognized in the offspring of Vietnam veterans as due to herbicide exposure.
b. Title 38 United States Code (U.S.C.) Section 1803 states that VA must provide health care benefits for children of Vietnam veterans who are born with spina bifida or any disability that is associated with such condition. The term “child,” with respect to a Vietnam veteran, means a natural child of the Vietnam veteran, regardless of age or marital status, who was conceived after the date on which the veteran first entered the Republic of Vietnam during the Vietnam era between January 9, 1962 and May 7, 1975, inclusive.
NOTE: The term “Vietnam veteran” means a veteran who performed active military, naval, or air service in the Republic of Vietnam during the Vietnam era. The Veterans Benefits Act of 2003 extended these benefits to the natural children of veterans who served in Korea between September 1, 1967, and August 31, 1971, and who were exposed to certain herbicides during such service in or near the Korean Demilitarized Zone (DMZ). The spina bifida conditions covered apply with respect to all forms and manifestations of spina bifida except spina bifida occulta.
NOTE: For information about this program, access Web site http://www.vba.va.gov/bln/21/benefits/Herbicide/index.htm#bm03, or contact the VA spina bifida-birth defects Hotline at 1-888-820-1756.
8. SPECIAL HEALTH CARE BENEFITS FOR WOMEN VIETNAM VETERANS’ CHILDREN WITH BIRTH DEFECTS
a. In accordance with the mandate in 38 U.S.C. 1813, VA has identified the birth defects of children of women Vietnam veterans that:
(1) Are associated with Vietnam service; and
(2) Result in permanent physical or mental disability.
b. A list of those diseases is available at http://www.vba.va.gov/bln/21/Topics/Women/Birth.htm. For further details concerning these benefits, contact the VA spina bifida /birth defects hotline at 1-888-820-1756.

My note: the following was added by VA after the regulation was established:
a. In accordance with the mandate in 38 U.S.C. 1813, VA has identified the birth defects of children of women Vietnam veterans...

When the birth defect studies were published the study indicated Cerebral Palsy had a higher ratio than Spina Bifida. However Cerebral Palsy was ignored. Why? In my opinion because it is far more common and survival rate is much higher.

Bottom line cost.


Here is a link to Sound Off Dave Barker topic on Agent Orange birth defects
http://forums.military.com/eve/forums/a/tpc/f/8280047191001/m/5000015591001

Dear Mr. Barker - Thank you for the information on SpinaBifida being the only deformity recognized by the VA. It is unfortunate that they cannot see the bigger picture.

I also went into your website and read the AO 07 update. What I found interesting, and yet alarming, was the information on Metabolic Syndrome and muscle disorders. I was "misdiagnosed" with MS when I was 15 years old. Later they went on to tell me it was Fibromyalgia and Fragile X related symptoms. Most recently, in fact just last week, I was diagnosed by my doctor to have METABOLIC SYNDROME!

What can I do to make the government understand that we are suffering?! It is so frustrating that my father, who fought for the freedom of our country, now has DEBILITATING affects from AO and unfortunately passed some of those affects on to his children and now his GRANDSON.... And now he has to fight for the government to recognize that he is suffering "enough" to receive compensation. He goes before the VA board on March 16th after 14 months of paperwork and doctor's appointments and hours of waiting and agonizing. He feels GUILTY because of the problems my sister and my son and I all have. He cries...and it breaks my heart. They gave so much - and now we are all suffering.

KLOVEHALL

DAVE will come by and chime in...he always does, he cares deeply and is the most committed person I have ever known, especially in AO cases.

I can imagine the guilt your Father must feel, and I know the heartbreak he endures as well. I wish all AO illnesses be recognized and compensated accordingly..and yes, that includes the most innocent of all..The Children.

I do have great empathy and your post serves to remind me to keep on going on and advocate over and over with a campaign I have been in for YEARS in constantly and consistently writing members of Congress of the plight of the "Children" If you don't mind, I would make a copy of your post to send to them. My intent is to keep hammering at their conscience in my hope that something will trigger it to finally pass legislation for recognition and justice for the children, and of course the veterans as well.

My own children have from "Baby" come down with the most bizzare and unexplainable things. Each time as I think back...My then wife, already very stressed..mainly because of me, told them a thousand fold.."No, no family history of this" "No, I researched the family on both sides"
One of the most common in my children..is their "Skin" my son has to wear gloves most of the time because his the skin cracks and bleeds, so he ultimately had to change careers and is now in IT..He didn't do it for the money, in fact, for him it was a net negative. My only daughter, who's son I ended up adopting..has these horrendous rashes under her hair most of her life..Lucky for her, I have a Doctor at the VA who prescribes me a cream with the knowledge that it's really for her, that she has to really scrub in her scalp. It is no cure, it only serves to lighten the effect. Unfortunately, the cream is extremely expensive and had she been forced to pay for it..EVEN with her insurance, it would still have cost her thousands of dollars each year. The VA I think, knows alot more than they will admit to and with that I KNOW there are literally thousands upon thousands of Children and now Grandchildren who suffer a huge range of abnormalities that I contribute to AO, and they do very much deserve compensation NOT for the money as those not familiar with AO issues may think, but for the ability to get the care, treatment and some semblance of quality life. Yes, my heart breaks too knowing that some of the health issues my children have are a result of me and yes, I feel guilty as hell too. If I had known about AO from the beginning, I probably would not have had any kids. I know that sounds harsh now..but I look at it "Can't miss anything you never had"

My Friend's son passed away last year at age 34..from Heart Disease. His Father is broken...He served in the Air Force during the Vietnam war, and He WAS directly involved in Operation Ranch Hand. I don't think I need to tell you how he feels..other than that he is simply "Broken" His guilt is so great that it cannot be measured. It is me that places fresh flowers on the grave..for him, because he cannot yet muster what's needed inside to go himself. I do it for him every Sunday. Sadly, other than asking me if the flowers I removed were still "Good" He has and we have not said one word about his son..It's been a year, and still, not a word. To me, it represents the pain he must feel.
I truly wish you the best as I pray for your Father...I hope he can find some peace, and feel very badly that even he is still fighting for his AO claim..ONE DAY...ALL WRONGS WILL BE RIGHTED. I believe that !
God Bless you and Godspeed to you and yours,
Eres Tu!
Freddy

It is with tears in my eyes that I reply to your sweet note. I am so very sorry for your friends loss, and for the ill that your children endure. It IS truly heartbreaking that we go through these mystery illnesses, always wondering in the back of our mind if we could have done something different.

I know that my dad feels the same way that you do about not having children had he known about the ramifications of AO. He expressed to me through tears that had he known of the problems with the AO while it was spilling at his feet on the helicopters, that he would NEVER have had children. And I, too, feel guilty, that had I known about all of this I myself would never have had children. In reality, they are harsh words to speak, but true none-the-less.

You are welcome to pass on my post, in hopes that it will someday make a difference. And I hope that you and my daddy and the thousands of other men and women who have dealt with health issues due to AO, will someday be helped.

Thank you again for your reply...my tears are flowing freely now and I will call my daddy and tell him I love him - and that it's truly not his fault.

God Bless You. ~Kim

quote:

klovehall
Dear Mr. Barker - Thank you for the information on SpinaBifida being the only deformity recognized by the VA. It is unfortunate that they cannot see the bigger picture.

I also went into your website and read the AO 07 update. What I found interesting, and yet alarming, was the information on Metabolic Syndrome and muscle disorders. I was "misdiagnosed" with MS when I was 15 years old. Later they went on to tell me it was Fibromyalgia and Fragile X related symptoms. Most recently, in fact just last week, I was diagnosed by my doctor to have METABOLIC SYNDROME!

What can I do to make the government understand that we are suffering?! It is so frustrating that my father, who fought for the freedom of our country, now has DEBILITATING affects from AO and unfortunately passed some of those affects on to his children and now his GRANDSON.... And now he has to fight for the government to recognize that he is suffering "enough" to receive compensation. He goes before the VA board on March 16th after 14 months of paperwork and doctor's appointments and hours of waiting and agonizing. He feels GUILTY because of the problems my sister and my son and I all have. He cries...and it breaks my heart. They gave so much - and now we are all suffering.

Since I no longer monitor this particular discussion thread, as it was transferred from my moderating duties in June 2008. Only when someone e-mails me to come over here will you see me responding to a post.

Here is the place you may find additional material on this subject. A link to the Sound Off Dave Barker topic on Agent Orange birth defects
http://forums.military.com/eve/forums/a/tpc/f/8280047191001/m/5000015591001

Hello, I'm writing this in hopes of some of you might read this, or might even be able to help.

My name is Joe, I'm currently 25 years old. I have one older brother who is 28. And Both me and my brother have been affected in similar ways as most of you discussed in this forum.

I have Chloracne which is an acne caused by the herbicide Agent Orange,this isn't your regular acne either, I have deep lesions in my skin mainly on my chest and back, and they can be very painful at times.

My Father had came in contact with Agent Orange in Vietnam when he was drafted. I also have thyroid problems, doctor had done a wand test and found a small nodule. I have had kidney problems since I was younger. But all problems go unseen or unnoticed because there isn't any help for Kids of Vietnam Veterans, except for Spina Bifida. Do they want me to wait til I do acquire that before they look at me?

My Dads problems are very extensive, he was diagnosed with Prostate cancer, high blood pressure, aneurysms one he had a stent done in his stomach, and the other is untreatable behind the brain. My dad also suffered a mild stroke, 2 years ago. He went through two heart-attacks during my younger years while growing up. I'm sure theres more I'm missing.

As for my brother, and he's the first born, he has chloracne also but Isn't nearly as bad as mine.

I definately believe there should be compensation for Veteran children with or without Spina Bifida. Nobody wants any of these problems, I know I don't, Its rather embarrassing that I bleed out on my pillow at night from Chloracne.

quote:

Originally posted by Joseph1216:
I definately believe there should be compensation for Veteran children with or without Spina Bifida. Nobody wants any of these problems, I know I don't, Its rather embarrassing that I bleed out on my pillow at night from Chloracne.

Much discussion is going on in reference to AO birth defects. The place you may find additional material on this subject is a click away. The Sound Off Dave Barker topic on Agent Orange birth defects
http://forums.military.com/eve/forums/a/tpc/f/8280047191001/m/5000015591001

My father was in vietman for 42 months from 1967 - 1971. He passed away in 2000 at 60 years old from renal cell carcinoma (kidney cancer). I have Crohns Disease, ulcerative colitis, 3 kidneys ( 1 is inactice), last November I had a total proctocolectomy and half of my pancreas removed due to a precancerous tumor. My sister is in remission (thank God) from Non-hodgkins lymphoma. My older sister born prior to his being in Vietnam is healthy. Can anyone relate or give me any advice. Thanks for listening.

The place you may find additional material on this subject is a click away. The Sound Off Dave Barker topic on Agent Orange birth defects
http://forums.military.com/eve...1001/m/5000015591001

Thanks for your post.

is there any new medical evidence correlating AO exposure to female related problems? my older sister has MS and i have PCOS, thyroid disorder, pituitary disorder, and now am insulin resistant.

I am the daughter of a vietnam veteran and I am also my dad only child. My dad passed anyone in 2007 of lung cancer and they say ao contributed to it. But I was wondering if any other children of the veterans have suffer from constant swelling of their legs. I have been tested by so many different doctors and no one can explain why my right leg is swollen all the time. I also bruise real easy and have had so many female problems that no one else in my family has had.

quote:

Originally posted by DaveBarker:
The place you may find additional material on this subject is a click away. The Sound Off Dave Barker topic on Agent Orange birth defects
http://forums.military.com/eve...1001/m/5000015591001

Also on the Sound Off Dave Barker Diiscussion Boards are additional female problems discussed. Please read "Agent Orange In Search Of The Truth." There are three pages of information on that set of boards.

Check it out.

I am currently married to a Vietnam Vet..he was in the Army...my first husband was also an Vietnam Vet..a marine...we had four children, three sons and one daughter. In the last several years, two of my sons have developed mysterious undiagdosed autoimmune problems. They have swelling in their joints with unbearable pain. I've seen my youngest son's hands swell and hurt so pain they would just tremble...he has seen rhuematoligists but as yet they put no name to the problem, just that it is an autoimmune disease. Their dad is 100% disabled due to ao exposure. Are there any avenues to find help for the children of vets who have these types of problems?

A very good medical opinion from a reputable medical professional relating a genetic predisposition to pediatric onset of rheumatoid arthritis, or other autoimmune response conditions to the parent's passing on genetic defects to the father's exposure to Agent Orange.

Unfortunately this would have to be won at the Court of Appeals for Veterans Claims (CAVC) which is the first judicial Court to preside over decisions decided at the VA's Board of Veterans' Appeals, however, if you had the time and resources you maybe be able to obtain such evidence.

Below is an example of a case won, however, this was only for direct service connection. See as follows, the key point here is how the evidence was weighted and how the BVA came to their decision:

Absent an identified cancer entitled to a statutory
presumption of service connection, the veteran's claim must
be decided on the basis of direct service connection. See
Combee.

Here the evidence is mixed. On the one hand, the record
includes a December 2001 IME report by a well-qualified
oncologist contains his opinion, supported by medical
literature and a detailed rationale, that there is no
substantial evidence to support a link between the veteran's
renal cell carcinoma and Agent Orange exposure.

On the other hand, a March 2004 affidavit submitted by a
scientist recognized as an expert in the molecular analysis
of cancer, contains his opinion that the veteran's renal cell
carcinoma was not caused by heredity but, rather, by an
environmental exposure. And, a March 2004 report by a well-
qualified oncologist contains his opinion, supported by
medical literature and a detailed rationale, that it is more
likely than not that the veteran's renal cell carcinoma was
caused by exposure to Agent Orange in Viet Nam.

The Board finds that there is an approximate balance of
positive and negative medical evidence on the issue of
whether the veteran's renal cell carcinoma was caused by
exposure to Agent Orange. Whenever there is an approximate
balance of positive and negative evidence regarding any issue
material to the determination of a matter, the benefit of the
doubt is to be given to the claimant. Accordingly, resolving
the benefit of the doubt in this case in the veteran's favor,
service connection for renal cell carcinoma is granted.
38 U.S.C.A. §§ 1110, 1116, 5100, 5103, 5103A, 5107; 38 C.F.R.
§§ 3.102, 3.303; Combee.