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tiffie

Agent Orange/Dioxin related illnesses

Posted by @tiffie in Just Want to Talk, Mar 19, 2012

I know this is a touchy subject for many, but I am still looking for answers. My trip to Jacksonville helped with some, but not all. I am suffering from a mystery illness and it seems to be related to my father's exposure to Agent Orange. Me and my sister both have the same symptoms, except she is more advanced. My niece is starting to show the symptoms. In my search online, I have found many other children of Vietnam Vets going through this. I guess I'm just wondering if there are any here, and if so, do you have a diagnosis yet? I have some such as fibromyalgia and connective tissue disease, but it doesn't cover all of the symptoms. The symptoms are very ms like. I am 35 years old and some days have to use a walker. I fall. I lose feeling in limbs. I can not even hold a job right now. I have met many other children who have had a wide range of illnesses and birth defects. I know a lot of us are suffering from mental illness including bipolar. I'm bipolar myself. But I have that answer. I want the answers for the pain and weakness and fatigue. I plan on revisiting the mayo clinic after I get better insurance since new symptoms have come on since my last visit. I know they did everything they could. I know my local doctors are. I'm just hoping to get more information to take to both there and my local doctors of people with similar symptoms and had a hard time getting diagnosed. My own research on dioxin is showing that these are very common symptoms of it. So just wondering who else is in the same boat.

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dawn976 likes this
tiffie

Posted by @tiffie, Mar 20, 2012

So I went to the rhuematologist today for a follow up. After witnessing some of my newer symptoms, such as electric shocks throughout the body, she wants me to come back to the mayo clinic and to call my local neurologist for a lp. Of course, she didn't offer to pay for either rofl.

Posted by @fieldsofdreamhotmailcom, Mar 24, 2012

Hi Tiffie... My husband was an Agent Orange Veteran who was treated at Mayo in Rochester, and succumbed to A/O related cancers 5 years ago. All 3 of our children have chronic health issues. My son in paticular has symptoms that you describe.... severe intermuscular & joint pains that have defied definitive diagnosis since he was a kid. The children & grandchildren of Vietnam Veterans have a myriad of illnesses & medical conditions that could well be related to their parent's toxic exposure. I've been involved with an on-line organization called Agent Orange Legacy for several years, fighting for health insurance for the children of Vietnam Veterans... the Legacy has been compiling a data base of all the illnesses of our children... you may want to check it out agentorangelegacy.com You'll find plenty of us in the same boat, discussing Agent Orange & our related health issues there, looking for answers. Agent Orange Legacy can also be found on Facebook.
There's also a more recent activiist offshoot of Legacy that can be found on FB called Children of Vietnam Veterans, working on this same issue. http://www.facebook.com/COVVHA with a little different focus.
Good luck to you.

covvha

Posted by @covvha, Apr 3, 2012

Actually we are not an "offshoot" of the Legacy. We are a brand new organization founded by 2 children of deceased Vietnam Veterans both suffering from birth defects from our fathers exposure to Agent Orange. Until we formed our org., there has never been a group BY Children of Vietnam Veterans FOR the children Of Vietnam Veterans. We are working very hard and have made many
accomplishments since our founding at the end of January 2012. Our main website is http://www.NoFoolsHere.org

dawn976

Posted by @dawn976, Nov 16, 2012

Will V.A. ever have to pay? My son suffers as well.

covvha

Posted by @covvha, Apr 3, 2012

Children of Vietnam Veterans Health Alliance is a new organization founded by 2 children of deceased Vietnam Veterans both suffering from birth defects from our fathers exposure to Agent Orange. Until we formed our org., there has never been a group BY Children of Vietnam Veterans FOR the children Of Vietnam Veterans. We are working very hard and have made many accomplishments since our founding at the end of January 2012. We are NOT an "offshoot" of the Legacy, nor do we work with that specific group. Our main website is http://www.NoFoolsHere.org

dawn976

Posted by @dawn976, Nov 16, 2012

I get the whole electrical issues as well. Like pins coming out of all pores of my body.

nptruong

Posted by @nptruong, Mar 28, 2012

Hello Agent Orange recepients,

We are more than happy to provide you with information about the data we have collected through our National Birth Defect Registry. On our website we have a fact sheet about this. Birth Defect Research for Children has collected data on thousands of cases of children reported by their parents to the Registry. The suggested pattern of adverse outcomes includes increases in learning, attention, immune and endocrine disorders .

This last year, our organization has submitted a Visionary Idea to National Institute of Environmental Health Sciences (NIESH) to develop a Center to provide diagnosis and treatment to Vietnam Veterans’ children with structural and/or functional disabilities. If adopted this idea would become part of the NIESH Five Year Strategic Plan. Even though our organization has submitted the idea, it is not certain that the idea will be approved. The Vietnam Veterans of America have also made the Centers Project part of their legislative agenda .

We would also like to encourage you to register in our National Birth Defect Registry if you have not already done so, this way we can further our research and project development. Please let us know if you would like to join us in supporting the “Children’s Center” project and we can suggest ways you can help.

With Best Regards,

Nina Truong
Outreach & Development Coordinator
Birth Defect Research for Children
976 Lake Baldwin Lane, Ste. 104
Orlando, FL 32814
http://www.birthdefects.org
Tel. 407-895-0802

covvha

Posted by @covvha, Apr 3, 2012

Children of Vietnam Veterans Health Alliance is a new organization founded by 2 children of deceased Vietnam Veterans both suffering from birth defects from our fathers exposure to Agent Orange. Until we formed our org., there has never been a group BY Children of Vietnam Veterans FOR the children Of Vietnam Veterans. We are working very hard and have made many accomplishments since our founding at the end of January 2012. We are NOT an "offshoot" of the Legacy, nor do we work with that specific group. Our main website is http://www.NoFoolsHere.org

dawn976 likes this
1970vietnamvet

Posted by @1970vietnamvet, Mar 30, 2012

You are not alone. I am a Nam Vet, (1970) and have Type II Diabetes, pereipheral Neuropathy in all 4 extremities and a host of other problems. My 38 year old daughter has MS. She was diagnosed on her 21st Birthday. She started with occular, migrane headaches. She gets a infusion once a month for an hour and must sit still for another hour. My son has had allergies almost from birth and asthma from shortly there after. My two grandchildren also have asthmatic problems. There are over 12 cancers recognised by the Veterans Administration that are regarded as being presumtive for our exposure to Agent Orange, (actually it was the Diioxin created in cooking the Agent Orange). The latest conditions are Parkinsons Disease and isthemic heart disease. Go to Vietnam Veterans of America, click on The Faces of Agent Orange and be horrified by the stories of our children and grandchildren. They are stories of the ones that lived. I can't tell you how many still birtgs happened to veterans wives. Please check it out.

covvha

Posted by @covvha, Apr 3, 2012

Children of Vietnam Veterans Health Alliance is a new organization founded by 2 children of deceased Vietnam Veterans both suffering from birth defects from our fathers exposure to Agent Orange. Until we formed our org., there has never been a group BY Children of Vietnam Veterans FOR the children Of Vietnam Veterans. We are working very hard and have made many accomplishments since our founding at the end of January 2012. We are NOT an "offshoot" of the Legacy, nor do we work with that specific group. Our main website is http://www.NoFoolsHere.org

eeversmann

Posted by @eeversmann, Apr 21, 2016

My father was in Vietnam and Thailand in 1970 as well. I have been diagnosed with MS. One of his other army buddies daughter's been diagnosed with MS as well. I am trying to see if there is a link in this disease along with others.

nptruong

Posted by @nptruong, Apr 22, 2016

Our organization, Birth Defect Research for Children, has been working on
the issue of birth defects and other disabilities in the children of Vietnam
veterans since 1986. We collect data on these conditions through our data
research project The National Birth Defect Registry.
http://birthdefects.org/national-birth-defect-registry/ We also have a
section of our web site devoted to our research on veterans' reproductive
issues. http://birthdefects.org/veterans-research/ There is legislation
pending in the house and senate for a special center to study the effects of
toxic exposures on the children and grandchildren of veterans.
https://www.congress.gov/bill/114th-congress/house-bill/1769/all-info Betty
Mekdeci, Executive Director

colleenyoung

Posted by @colleenyoung, May 4, 2016

Welcome to Connect @eeversmann.

retairforceman

Posted by @retairforceman, May 4, 2016

I too have my only child suffering from asthmas, joint diseases, cancers, etc. And my only grandchild was born with multiple birth defects like 24 fingers and toes, autism aspergers syndrome,  eye deformities and blindness, growth problems , etc. I have 33 autoimmune diseases including 4 cancers, ischemic heart disease, , ANKLYLOSING SPONDIOLYSIS,  SPINAL STENOSIS,  DEGENERATIVE JOINT AND DISC DISEASE,   OSTEOPOROSIS and osteoarthritis,  psoriasis,  chloracne,  scar tissue,  peripheral neuropathy in all limbs and more. I handled, mixed by hand and power sprayed AGENT ORANGE HERBICIDES ON ANDERSEN.AFB GUAM DURING THE VIETNAM WAR AND LATER.  I am very ill and very short life left in me.
MSGT LEROY G FOSTER USAF.RET 

covvha

Posted by @covvha, Apr 3, 2012

Children of Vietnam Veterans Health Alliance is a new organization founded by 2 children of deceased Vietnam Veterans both suffering from birth defects from our fathers exposure to Agent Orange. Until we formed our org., there has never been a group BY Children of Vietnam Veterans FOR the children Of Vietnam Veterans. We are working very hard and have made many accomplishments since our founding at the end of January 2012. We are NOT an "offshoot" of the Legacy, nor do we work with that specific group. Our main website is http://www.NoFoolsHere.org

dawn976 likes this
dawn976

Posted by @dawn976, Nov 16, 2012

My father recently passed from complications of Agent Orange. I have idiopathic toxic neuropathy, am 36 yrs old. Have spastictic muscles, fibromyalgia, have epilepsy, have had 3 mild strokes. And much more. I am in a wheelchair part time which had been full time until I had 60 nerves burned off at the roots...and spent 2 yrs in traction and still have hip disyplasia. I also have heart issues. I am reading my own stories on this site. So good to know I am not the only child of agent orange through my father. My heart Dr wants to send me to Mayo Clinic. Seems every which way I turn I am getting poked and prodded. I am tired. Was recently placed on respirator at night due to carbon dioxide replacing oxygen as well as caused due to endocrine issues. I have also tested positive for dioxine in my blood,tissue sample when a dermatologist did a biopsy on a skin lesion.

nurseleanne

Posted by @nurseleanne, May 10, 2013

I am an OR Nurse and have been suffering from what doctors are calling Dyshydrotic Eczema for 4 years. I have tried every steroid cream out there, been on high doses of steroids and nothing has really helped. My hands and arms break out in a severe blistering rah. At times, the skin just peels off. I wish I could find someone or something that could help me. My dad was in Vietnam and passed away in 1992 after complications from Agent Orange exposure.

gregsr

Posted by @gregsr, Apr 27, 2016

I'm a 100% disabled Viet-Nam Vet, wresting with agent orange due to the war, it has effective my body organs like my kidneys which caused me to be put on dialysis three days a week which is pure hell, much joint pain and I could go on but, lest stop there, seeking information pertaining to artificial kidney's or human kidney cloning, do anyone know anything about this?

gregsr

Posted by @gregsr, Apr 27, 2016

Kidney

alysebrunella

Posted by @alysebrunella, Apr 27, 2016

Hi @gregsr. I see that my fellow moderators, and Connect community members, have replied to your previous queries about artificial kidney and provided some information. As noted, the bioartificial kidney is not yet available for standard use. Developments are still in the trial phase.

I’ve moved your post into this discussion thread where other Connect members are talking about the effects of Agent Orange. You might also appreciate connecting with @retairforceman and @Robert43DAP on this discussion thread https://connect.mayoclinic.org/discussion/autoimmune-diseases-research-with-the-iom-agent-orange-committee-update-2012-june/

gregsr

Posted by @gregsr, Apr 27, 2016

Thank you

gregsr

Posted by @gregsr, Apr 28, 2016

Yes, I'm a 100% disabled Viet-Nam vet, suffering with the effects of agent orange, this chemical was used to kill vegetation in the jungles so that we could see the enemy, not knowing the effects this would have later in life, yes this agent orange has effected my eyes-liver-kidneys-joints, I'm on dialysis now, there is a compensation the va may pay the childen of viet-nam vets for they conditions-you will have to check with the va about how you would go about making this claim.

retairforceman

Posted by @retairforceman, Apr 28, 2016

I too suffer from many autoimmune diseases including severe spinal stenosis and ANKLYLOSING SPONDIOLYSIS with osteoporosis and osteoarthritis,  colon cancer, rectal cancer,  cancerous tumor,  thyroid cancer,  hypothyroidism,  bladder cancer,  bladder disease,  peripheral neuropathy,  sciatica,  ischemic heart disease,  psoriasis, degenerative joint and disc disease,  and more. I handled, mixed by hand and power sprayed AGENT ORANGE HERBICIDES ON ANDERSEN.AFB GUAM and off base from September 68 to June 78. My daughter is severely affected with joint disease, hip dysplasia, reproductive issues and cancer. My only grandchild suffers from multiple birth defects including 24 fingers and toes, heart disease,  autism, blindness, add/ADHD and more. 

retairforceman

Posted by @retairforceman, Apr 28, 2016

For your information

colleenyoung

Posted by @colleenyoung, Apr 28, 2016

Thanks for jumping in on this discussion @retairforceman. I can't believe the number of conditions this #%*&! agent orange caused and for generations!

tonistable

Posted by @tonistable, May 11, 2016

OMG I will pray for UR child & grand child. I don't know what to suggest to U .

briansr

Posted by @briansr, May 11, 2016

And I thought I had problems. I feel fine? I'll pray for your whole family.

johnjames

Posted by @johnjames, Sep 28, 2016

Agent Orange is a chemical that will attack our immune system - I was told by my VA Nero/ Doctor, he diagnosed me with Agent Orange Parkinson's two years ago- I went through a 4-5 hour agent orange exam at the VA Hospital in Phoenix, they also put me through an interview with the VA' " Agent Orange Registry Office" this is where they looked at my Army 201 file and my two tours in Viet Nam and where I was based both times, which was within the Iron Triangle - why this is important, 80% of troops within that area was sprayed the most and at times we were in the jungle for two weeks-wearing the same Jungle Fatigues( which was soaped with the chemicals) The reason I bring this up- the VA after looking at my record and seeing that were I was- gave me an approval Agent Orange Certificate- this proved that any health issues you have that is listed in the health problems that doctors from the VA has added, automatically assumed it's from Agent Orange. I had My Certificate copy for all my children- which they use when they go to the VA and file a medical complaint that complied with the medical list approved by the VA-do to agent orange. I hope this makes sense- and it's something that can help anyone fighting the system for approval and medical care. JJ

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