Protecting our veterans' children
Legacy of Our Veterans' Military Exposures L3C
Justice - social, environmental, human
Protecting our veterans' children™

Agent Orange Genetic Testing for Disabled Children of Vietnam Veterans

 

Protecting our veterans' children

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I get emails daily with a wide variety of questions.  One of the most common questions is if genetic testing is available which will detect Agent Orange in dependents of Vietnam veterans exposed.  Many children of Vietnam veterans & their families want to have their DNA tested. At one time there was a program, University of South Carolina-The Center for Developmental Disabilities, for the children of Vietnam veterans, offered genetic counseling but has since been discontinued.

I often write that this is a difficult issue to answer because there is no one easy answer.  My understanding is that genetic testing is available and is very costly.  Will the test reveal what it is we wish to know?  I don’t think so.

I do know that there are children of Vietnam veterans exposed to Agent Orange who have been tested.  However, they were tested only after they were diagnosed with a rare disease or a disease that couldn’t be explained by their family history.  In each case a mutated gene was found.  It is my understanding that mutated genes can be linked to environmental exposures.  Gene Mutations and Genetic Change.

There are also less expensive tests that will detect dioxin in the body called body burden testing.  This type of testing might be easier to obtain & could be less expensive if you have been exposed directly or just want to find out how many chemicals and toxins are present in your body. This notion brings up an interesting issue which we have encountered on numerous occasions.

The issue is whether or not the children of  Vietnam veterans have enough dioxin in their bodies to be detected by ‘Body Burden Testing’. If the dioxin was passed genetically, then it stands to reason that, dioxin would not be present (since the child was not exposed directly) unless the dioxin has accumulated from other sources which is to be expected since it occurs naturally and is passed through the food chain.

  1. Destiney Reply

    My brother is at a loss right now he has health issues in explained my father was exposed to agent orange in Vietnam but has since passed away . Drs can not find what’s wrong with him as there are days that go by he so swollen and so much pain he can’t move .. I am trying to find answers to how he can get tested but as I’m seeing no where does this it’s a shame .

    • Profile photo of LOVME
      LOVME Reply

      Hi Destiney, I’m very sorry for the loss of your father. I am also sorry to hear about your brother’s health issues. We have found, after collecting health data of children of veterans exposed to Agent Orange, that there is a high incidence of birth defects, autoimmune and rare disease, cancers and mental health illness and learning disabilities such as Autism, ADHD. One of the issues we see is that autoimmune diseases are very difficult to diagnosis because many can not be detected by blood tests. The blood tests your doctor take annually will not detect the diseases that do have a blood test. That is because you have to test specifically for the autoimmune disease you believe you might have. Rare diseases also are so rare that many doctors do not recognize the symptoms because so few people have them. You should write down your brother’s symptoms and visit NORD rare disease database which also has autoimmune diseases as well. You will have do to your own research. That is what all of our families have to do in order to get answers. Here is the link to NORD rare disease database>>>https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/. You should also review Arnold Chiari information because we found that many of the adult children and grandchildren have Chiari. Here is a link where you can learn more about Chiari>>>http://lovme.org/agent-orange-legacy-chiari/. Here is a link with information that should answer some of your questions>>>http://lovme.org/important-links-for-children-of-veterans-exposed-to-agent-orange/. At this link you will find information about legislation that was recently passed requiring further research into the birth defects/illnesses in the children of veterans suffering from toxic military exposures. You will also find a link where you can submit a claim but it will not be approved. Also do register your brother with Birth Defect Research for Children National Birth Defect Registry. If you have any further questions to do hesitate to contact me at aolegacy@gmail.com. We offer a closed support group for families of veterans exposed to Agent Orange and the veteran. You are welcome to join us here>>>https://www.facebook.com/groups/aolivingwithagentorange/. Sincerely, Sharon L. Perry, Founder.

  2. Gram Reply

    We have a great-grandson born with the type of spina bifida that the VA recognizes. My husband was in the Vietnam DMZ area. We are at a loss as to how to obtain dna testing here in Ohio.

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      LOVME Reply

      Thank you for your comment Gram. Unfortunately, VA only recognizes spina bifida in the children of veterans exposed to Agent Orange. They have not yet recognized same disability in the grandchildren. However, there was legislation, Toxic Exposure Research Act of 2015 which was passed and signed into law that might help your grandchild. Here is a link where you can learn more>>>http://lovme.org/legislation/legislation-2015-2016/. If you haven’t already, please register your great grandchild with Birth Defect Reserach for Children National Birth Defect Registry at this link>>>http://lovme.org/register-now-important-message-to-children-of-vietnam-veterans-2/. This post might answer some of your questions and also has a lot of useful information at this link>>>http://lovme.org/important-links-for-children-of-veterans-exposed-to-agent-orange/

  3. Mary Reply

    my father is just now being diagnosed with autoimmune issues at 76. They are finally “connecting” the dots. I as the only child born after his exposure, am lucky with no health issues. My daughter however was diagnosed at 5 with dandy walker variant, thinning of corpus callosum and hydrocephalus . I was on the Dandy walker variant page a noticed a question that caused me to research. We have no one else within the family, children or grandkids with the condition. I am now really wondering if it can be traced thru my genetics to my father.

    • Profile photo of LOVME
      LOVME Reply

      Here is the best info we have regarding your question>>>3) Is there any genetic testing for Agent Orange dependents?
      Generational victims of Agent Orange/Dioxin exposure were not exposed first hand or directly so getting a body burden test would not be helpful. Even those who were exposed initially did not show any dioxin in their blood. The reason is that as time passes dioxin is eventually stored in the body fat.

      However, some children of Vietnam veterans exposed to Agent Orange, who provided us with health information, have had genetic testing because they were diagnosed with a rare disease or a unexplained disease. The cases we are familiar with have all found a mutated gene. Mutated genes can be linked to chemical exposure.

      Testing of this type is available but very expensive. There aren’t any programs or funding that we are aware of either. The usual process is as described above.

      Our research tells us that body burden testing is the least expensive way to find out how much dioxin you might have been exposed to. If you weren’t exposed yourself then “Body Burden” testing will not be helpful to you. If you have lived in Vietnam you might benefit from such a test or if you have been exposed directly yourself.

      http://lovme.org/faqagentorange/

  4. M Borgen Reply

    My father is 100% service connected due to Agent Orange. My case is a unique one as my mother is Vietnamese and I was born in Bien Hoa in 68. We stayed until Oct. of 69. I was born with a US birth certificate even though I was born in Vietnam. For years I have suffered with pressure headaches but not until 2011 was I diagnosed with an Arachnoid Cyst. That same year my son was diagnosed with Choroiderimia which no one on either side of my parents family has a history of but apparently I am a carrier and so now is my daughter. I went to VA but they say because I was born a civilian they can’t help me. My lineage is at jeopardy and my children have no clue of what they are having to deal with. I myself have a variety of health issues but nothing that the VA or government with recognize or link to Agent Orange. From my own research I have read that this agent can effect dna (gnome) which can alter the human fetus, I’m wondering if I am one of these rare cases. I am trying to find avenues to find out just what’s going on with me and it looks like I should get genetic testing. Can you help?

    • Profile photo of LOVME
      LOVME Reply

      Here is the best info we have regarding your question>>>3) Is there any genetic testing for Agent Orange dependents?
      Generational victims of Agent Orange/Dioxin exposure were not exposed first hand or directly so getting a body burden test would not be helpful. Even those who were exposed initially did not show any dioxin in their blood. The reason is that as time passes dioxin is eventually stored in the body fat.

      However, some children of Vietnam veterans exposed to Agent Orange, who provided us with health information, have had genetic testing because they were diagnosed with a rare disease or a unexplained disease. The cases we are familiar with have all found a mutated gene. Mutated genes can be linked to chemical exposure.

      Testing of this type is available but very expensive. There aren’t any programs or funding that we are aware of either. The usual process is as described above.

      Our research tells us that body burden testing is the least expensive way to find out how much dioxin you might have been exposed to. If you weren’t exposed yourself then “Body Burden” testing will not be helpful to you. If you have lived in Vietnam you might benefit from such a test or if you have been exposed directly yourself.

      http://lovme.org/faqagentorange/

    • Profile photo of LOVME
      LOVME Reply

      M Borgen, I would recommend that you join our closed support group on FB. You should get plenty of advice from the group. Join at this link>>>https://www.facebook.com/groups/aolivingwithagentorange/

  5. Bruce Dobson Reply

    I am scheduled to go to Dana Farber Cancer Hosp. in Boston in March for generic testing because of my Colon Cancer last August. I will ask them about generic testing concerning AO.

    Bruce Dobson
    VVA 908

  6. Robert Davis Reply

    I was wondering if there was any way to find out now if there was some connection to my cervical dystonia to my fathers exposure. He passed away 9 years ago from metastasized cancer due to his exposure. No one in my family has this condition so there is no family history that would have caused it and my researching the condition has shown that it is caused from a mutated DYT1 gene. The VA doesn’t recognize any condition besides spina bifida in male offspring due to exposure

    • Profile photo of LOVME
      LOVME Reply

      Dear Robert, I’m very sorry for the loss of your father Robert. You are correct VA only recognizes Spina Bifida only. We just launched this website and still in transition so I will give you a link to some posts that you will find very helpful>>>IMPORTANT LINKS FOR CHILDREN OF VETERANS EXPOSED TO AGENT ORANGE
      http://www.agentorangelegacy.blogspot.com/2013/08/important-links-for-children-of-vietnam.html Please take the time to read them over because you will find info helpful to your situation. We also offer a closed support group on facebook for families of veterans exposed to Agent Orange and the veteran at this link>>>https://www.facebook.com/groups/aolivingwithagentorange/. If you would like to honor your husband’s memory please send image, veteran’s name, date of death, any info you have about his service, and also you believe his death was connected to exposure to Agent Orange to aolegacy@gmail.com. Here is the link to the memorial on the website>>>http://lovme.org/agent-orange-vietnam-veterans-memorial/ AND link for AOVVM memorial on facebook>>>https://www.facebook.com/aovvm.

  7. Rachel Mayhew Reply

    All of the links in your message have a 404 page not found error! I’m digging for any recent info on how to get mine and my sons health issues! My father is a Vietnam Vet, He ran all the cable and poles for communication. He had to handle and check every inch of the lines before they were run. It came from one of the same warehouses that stored or manufactured the AO and it was covered in the stuff! He has multiple health issues as do my son and myself! I was born with a rare heart condition called Shones complex! Its multiple malformations and murmurs of the heart. I’ve had one surgery(Coarctation of the Aorta) and told I will have more down the road. I also have a long list of other health issues that have plagued my whole life! My son has Developmental Delays, Autism, ADHD and severe Anxiety disorder and a Horseshoe kidney as well! I am 33 and Ive had multiple miscarriages and since, have had to have a hysterectomy to remove rapidly growing squamous cells and severe endometriosis. I have chronic pain syndrome and sleeping disorders, Depression, PTSD, Asthma, deviated septum, Fibromialga, both my son and I have always had major issues with our poor teeth as we both have severe vitamin D depletion and no amount of taking it will raise it and keep it normal……. The list is exhausting as has been dealing with all of it wondering why we got the lions share of health issues. Then my dad called and told me to look this up a bit more and I have been shocked at all the people affected. I just need to know where to start! Any info you may have would be wonderful! Thanks

    Rachel M

    • Profile photo of LOVME
      LOVME Reply

      Rachel that was because we were still building the website and will be for a while. So sometimes you will find errors and we will do our best to fix them.

  8. Terry Reply

    I personally am 100% disabled due to PTSD.  They originally rejected Agent Orange as a reason for rejecting my claim for Vitiligo I developed at 58 years old.  I just received a letter inicating the VA has "Determined (me) to be a Vietnam-era herbicide-exposed Veteran".  I don't know if this means anything to me but my 22 years old daughter (who does not drink) has very high ALT( I think this is also known as SGPT) levels.  I have read on another website that liver disease can be a birth defect related to my exposure to Agent Orange.
    Any advice?

    • Profile photo of Gena
      Gena Reply

      Thank you for your comment. You should read this for more information: http://en.wikipedia.org/wiki/Liver_function_tests.
      Our research indicates that there is a high incidence of autoimmune and rare disease among the children of Vietnam veterans exposed to Agent Orange.
      AARDA states that there is untold suffering for persons with autoimmune diseases due to misdiagnosis and delayed diagnosis which may result in damage to vital organs.
      Here is the link: http://www.aarda.org/mission_statement.php. What that means is that autoimmune and rare diseases are hard to diagnose and often mimic the symptoms
      of other diseases so are also misdiagnosed which is why failure of vital organs is of concern. The annual blood tests will not detect an autoimmune disease and the
      autoimmune disease in question must be tested for specifically. Sometimes there are not blood tests for certain autoimmune diseases. Rare diseases are hard to diagnose
      because they are rare so doctors are often not familiar with the symptoms. You should have y our daughter write down all her symptoms no matter how insignificant or silly
      they may seem or sound. You should check our reported illness list to become familiar with the other kinds of diseases and birth defects other children of Vietnam vets
      have reported to us: http://agentorangelegacy.com/reported-illnesses/. Then you should also use the NORD database to find autoimmune and rare diseases with similar symptoms
      as your child: http://www.rarediseases.org/rare-disease-information/rare-diseases. If you have any further questions do not hesitate to contact me at aolegacy@gmail.com. Sincerely,
      Sharon L. Perry, Founder.

    • Marcia Bachand Reply

      My husband has chroic lymphocytic leukemia plus other ailments from being exposed to agent orange Vietnam Vet 1967-68-69 our daughter who is now 41 has kidney problems-also have your white blood cells checked that is how they detected the leukemia in my husband that was almost two years ago-it is a very slow moving leukemia but it is still there and like all vets we live with it everyday-best wishes to all vets & families living with agent orange disease

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