Effects of Agent Orange
Effects of Agent Orange
Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3 rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for those who are struggling to find Help, their voice, and are unable to advocate for themselves. TRANSCRIPT s8e10- PodcastDx- Agent Orange Lita T 00:10 Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita. Ron 00:22 I'm Ron Jean 00:22 and I'm Jean Marie. Lita T 00:23 Collectively, we're the hosts of podcast dx. Our guest today is Tara. She is the daughter of a disabled US Marine Corps veteran who had to leave her position in government health care after falling ill with the first of three rare diseases that are associated with her dad's exposure to Agent Orange. It's a dioxide, Jean 00:48 dioxin Lita T 00:50 used while he was serving in the Vietnam War. Her goal today is to shed light on those who are struggling with the many disabling or debilitating conditions from Agent Orange and other rare diseases, to advocate for those who are struggling to find help their voice and are unable to advocate for themselves. Jean 01:12 Hi Tara. Hi, Tara, Tara 01:14 Hi, Ron 01:16 Tara to give our audience some background on Agent Orange. Birth defects are showing up in children of veterans who served in America's military during the Vietnam War. The mil, the military actually sprayed more than 20 million gallons of the powerful defoliant in Vietnam, Laos and Cambodia to deny the enemy food sources and cover 10s of 1000s of American military personnel handled, sprayed or were sprayed by the herbicide. The chemicals in Agent Orange are known to cause a variety of illnesses including several types of cancers, among other diseases. The list of illnesses tied to Agent Orange is posted on the Department of Veterans Affairs website, and they include and I may struggle with some of these Lita T 02:09 good luck Ron. Ron 02:12 Al amyloidosis. Chronic B cell leukemia, Jean 02:18 leukemia, Lita T 02:19 leukemia, Ron 02:19 leukemia. Told you I was gonna struggle Lita T 02:24 mmhhmm Ron 02:24 Chloracne, Is that right? Lita T 02:26 Well, we could try. Jean 02:27 And actually I was just watching there's a Netflix series on now about spies. And one of the individuals who they attempt attempted to assassinate with dioxins has this and it's very, very it's a very visual type thing you can really you can definitely discern that. That's what that is. Ron 02:48 Wow! There's also Lita T 02:51 diabetes type 2 Ron 02:52 Yep. Thank you Hodgkin's disease, ischemic heart disease, multiple myeloma, also non Hodgkins lymphoma, Parkinson's disease, peripheral neuropathy, at least the early onset of it. Porphyria Cutanea Tarda. I hope I got that right. It also includes prostate cancer and other respiratory cancers, such as lung cancer, cancer of the larynx, trachea and bronchus. Also soft tissue sarcomas other than osteosarcoma, Chandrosarcoma Kaposi sarcoma, or mesothelioma. And a group of different types of cancers in the body tissues such as muscle fat, I'm sorry, muscle, fat, blood and lymph vessels, and also connective tissue. And it took decades for the Department of Veterans Affairs to admit that the powerful herbicide poisoned 1000s of their military members. Jean 04:00 And that's right, Ron, Tara 04:01 Yes Jean 04:01 and the children of the men and women that served and were effected by Agent Orange have a possibility of being you know, like the children might be born with spina bifida that's quite common. And that's a birth defect that occurs while still in in utero, and where the spinal cord fails to close at the bottom. And then children of women that served in the same situation have a larger set of possible birth defects that the VA does recognize. And that's because women are born with the same number of eggs, you know, they they carry those with them their entire lives, whereas men are constantly producing new sperm. Lita T 04:37 Right. And we are going to get to our guest in a minute. Tara 04:40 I know Lita T 04:40 I hate to put you off, but we're just trying to save you some of the background information here, Tara, According to... Tara 04:48 No, I appreciate it. Lita T 04:49 (laughter) That's okay. According to the VA that covered birth defects for children born to women who served in Vietnam and the Korean demilitarized zone. Include. Okay, now it's my turn. Ron 05:02 Exactly Lita T 05:03 Achondroplasia, cleft lip and cleft palate, congenital heart diseases. congenital talipes equinovarus Oh, that's called clubfoot. Okay, I should have just said clubfoot, esophageal and intestinal atresia, Hallerman-Streif or Steiff? stryfe Hallerman-Streiff syndrome, boy Jack's gonna have fun editing this one Jean 05:30 Or Dom Lita T 05:31 or Dominic, whoever gets lucky, Ron 05:33 Dominic's shaking his head no. Lita T 05:34 (laughter) Hip dysplasia, Hirschsprung's disease which is a congenital mega colon, hydrocephalus due to aqueductal stenosis. Hypose, hypospadias, hypospadias. We'll say hypospadias, imperforte anus, neural tube defects, Poland syndrome pyloric stenosis, syndactyly or fused digits. Oh, that's like webbed feet. Is that right? Okay. tracheoesophageal fistula? I did pretty good on that one, undescended testicle. Williams Syndrome, Jean 06:24 and we laughed at the fact that we can't pronounce these things. Lita T 06:27 Yeah, we're not laughing at the disease. Ron 06:30 the sad part about is this agent orange causes all of this. Lita T 06:33 Yeah, Jean 06:33 Right, right Lita T 06:34 Yeah. Jean 06:34 And I mean, Tara, you must have become like an, you know, you have to know so much and learn so much. Because these are things that people normally Lita T 06:44 normally don't even think about Jean 06:45 haven't even heard. Lita T 06:46 It's not in our everyday vocabulary. No. So, Tara, (laughter) back to you. Thank you for taking the time to speak with us today. We really appreciate it. Now, can you start our listeners out by telling us what conditions are you personally dealing with? Tara 07:01 Yeah, well, thank you for having me. I'm really grateful to have this opportunity to speak about this. Because, as you just mentioned, all of those conditions that I'm gonna put in, quote, air quotes recognized as being caused by Agent Orange, there are a slew of other conditions. And along with medical research out there that support connections between Agent Orange and these conditions, although they're not identified as being recognized. I myself have just in the past three and a half years been diagnosed with three of those. The first is a vascular necrosis, which I have in both knees, both hips and both shoulders. A Vascular Necrosis is the the first that I was diagnosed with, which is technically called multifocal, because I have it all over. There are many citations out there that support the association between Agent Orange and a vascular necrosis. And the second diagnosis that I had was intracranial hypertension, which I actually caused me to go blind, Lita T 08:17 Ohh! Tara 08:17 completely blind, and I was never supposed to, I was never supposed to see again, ended up having to have a brain operation and a VP shunt, but that it's a central nervous system disorder that affects your your ventricles, your vessels, which is linked to the agent, orange dioxin similar to spinal bifida, Chiari, which there's literature out there supporting the connection to that as well. Lita T 08:44 MMhhmm Tara 08:44 And the third that I was diagnosed with last year was interstitial lung disease, which causes doctors to ask if I've been around birds. But it's not just me. My sister also gets it. And there is also a slew of research out there showing the connection between respiratory conditions, not just lung cancer, respiratory cancers that are related to Agent Orange. And as recently as July 21 2020. There was a research article on that by is on the VA website for lung diseases, saying that additional research needs to be done for the veteran. So if all this research still needs to be done for the veterans, there's still so much that has to happen just for their descendants, their offspring Ron 09:41 Right, Lita T 09:41 Right, right, because I've heard that it's also being passed on to the grandchildren. So it must be doing something Tara 09:48 Yes Lita T 09:48 in the genetic links, right? Tara 09:50 Yes. Yes, it's multi generational, and it can lie dormant for years like mine didn't. It didn't show up until I was 40. Ron 10:00 WOW! Tara 10:00 yeah. And and my sister, my sister was actually born with webbed feet, which they recognized as one of the Ron 10:09 conditions? Tara 10:09 things that correct that can be passed on to descendants. That and she also has the same lung condition that I have. But so we both have it. Lita T 10:18 Wow Jean 10:19 and dioxins are also found in other areas. I mean, it's something that if you're, you know, say your your family wasn't exposed to Agent Orange, but you know, you should be aware of it, Lita T 10:30 like landscapers, are you saying? Jean 10:31 No, like on paper mills, Oh, there they are found in other areas in in industry. And this actually does kind of hit close to home because, um, Agent Orange was originally developed at the University of Illinois as a means to help grow soybeans. And it wasn't it used it Lita T 10:38 as a chemical weapon Jean 10:42 originally, very low doses, and then the military Lita T 10:53 weaponized it basically. Jean 10:54 Yeah, yeah Lita T 10:55 Well thank you, Tara. I think our listeners have a better understanding of what we're going to be talking about now. Since we only discuss one one diagnosis per episode, we would like to discuss your battle with multifocal avascular necrosis, also known as AVN. Perhaps you're willing to come back on another episode and talk about the other problems individually? Would that be okay? Tara 11:19 Absolutely. Lita T 11:20 Great. So we could make this into like a mini series? Jean 11:24 Yes Yes. Cuz I mean, it's, it's Tara 11:26 absolutely. Lita T 11:27 That would be really, really great. Jean 11:28 Yeah Well, and yeah, we can kind of understand that when you when you volunteer for the military. You know, there's a lot of things that you're going to be exposed to that normal, civilians... Yeah. Lita T 11:28 And I don't know if you're aware of, but Jean and I are both veterans. And we always support any veteran activity that's out there. Because it's also supporting us. Jean 11:49 Actually we just, you know, we were just saying this morning that, you know, the vaccine for COVID is not mandatory, they can't really make it mandatory. However, in the military, it would be mandatory, because you're giving away your life for your country. Tara 12:04 Yeah! Lita T 12:04 However, does that mean you're giving away your children's lives, your grandchildren's lives, this is where this topic is going to be important. Jean 12:12 And there is there is the onus on them to keep their personal safe. Lita T 12:16 Yeah. Jean 12:16 And whenever possible, prevent, you know, disease and illness Lita T 12:20 Right Jean 12:20 that kind of situation, Lita T 12:21 right Tara 12:22 Yep. I completely agree. And oftentimes, you know, the military families, the sacrifices that they make when their loved ones are off serving, or the sacrifices, in this case, their health. So I completely agree. Lita T 12:39 Well, yeah, we never would have expected this type of a reaction based on Agent Orange, but now we're learning Jean 12:47 Yeah. And Tara 12:48 I know, Jean 12:49 Tara, can you tell us? What is AVN? And which bones? You said that you have it? It's multi Lita T 12:55 shoulders? Jean 12:56 Yeah. Shoulders in everything? Can you tell us which exact which joints are affected in your body? Lita T 13:01 And what is it Jean 13:01 in? What is it? Yeah, Tara 13:04 sure. Well, avascular necrosis is It's the result of reduction of the blood flows to the bone. I, I have it in both knees, both hips, both shoulders, which basically means my bones didn't get enough of the blood, which caused them to start to die. And once the bones start to die, they don't just regenerate themselves. Now, here's an interesting fact. I was diagnosed with this three and a half years ago, my dad, the veter... the Vietnam veteran was just diagnosed with that three months ago. And Jean 13:41 Oh my gosh, Tara 13:42 and there's multiple, like I said, there's multiple citations out there of so many other veterans and their descendants, who have also been diagnosed with avascular necrosis. But what it does is as the bone dies, it brings the entire joint with it. So oftentimes, it's missed. It's not diagnosed until it's until at a later stage, which makes it a lot more complex. And it's very hard to find. Lita T 14:14 Does it start out? Yeah, the symptoms as they start out, is it does it feel like a arthritic type of a feeling or how did the symptoms start with you? Tara 14:24 Well, what started interestingly, I woke up one morning and I thought that I had twisted my knee and my sleep. So it felt like a torn ligament in my knee. And I ended up going to the emergency room and I was misdiagnosed with bone cancer. Because Ron 14:44 Oh Wow, Tara 14:45 it Yeah, it looks like bone like white specks all in my bones. Jean 14:52 Mhhmm Lita T 14:52 Ohhh! Tara 14:52 And that's the dead bone marks. They're called bone infarct. So I have that as well as, as the death on the end of the bone, which is the a vascular necrosis too. So that was the initial diagnosis. And I, it took me all over the country, I ended up going to Mayo Clinic in Rochester, Minnesota to trying to find a diagnosis and help, which ultimately landed me in New York City at New York Presbyterian, where I found a doctor to do a bilateral hip procedure on me to try and slow down the progression. Lita T 15:31 Okay Tara 15:32 So, and maybe I should touch more on, I guess, how do you want me to touch more on the connection between avascular necrosis and Agent Orange? Lita T 15:42 Sure, sure. Tara 15:45 Okay, hold on, let me get let me get there, my notes... Lita T 15:49 she that's what Jean was saying. You have to become a expert. Jean 15:53 Subject matter expert I think there should be honorary doctorates. Lita T 15:56 Yes. Jean 15:57 For patients like you. Yeah Tara 15:59 Yeah, you have to you have to be your own, like advocate. And that's the biggest challenge especially says it's considered rare. There's not a lot of doctors who actually have the knowledge that you need. So you get Misdiagnosed, and you get misinformation, which causes you to lose time, and your options for treatment diminish. Ron 16:25 Absolutely Tara 16:25 So hold on one second. Sorry. Jean 16:29 And I think Mayo Clinic is very interesting in Rochester, Minnesota, because the weather gets so cold there. I like to call it mole city. I don't know if they would agree with me calling it mole city Lita T 16:39 (laughter) the tunnel. Jean 16:39 But there's tunnels underground that connect the hospital to like the hotels, the hospital to the grocery store, to the library. So you don't have to go out there. freezing cold Lita T 16:49 It's very nice. It's very nice Jean 16:50 It's unique. It's it's kind of fun. Lita T 16:52 Right? Jean 16:53 And there's little shops all along the route. Lita T 16:55 Yes. Tara 16:55 Okay. Here we are. So the connection with the a vascular necrosis, and Agent Orange. So Avascular Necrosis, like I said, it's a result of the reduction of the blood flow to the bone. And Agent Orange has an adverse effect on blood vessels. So there's medical literature, literature that support Agent Orange, and the dioxin is capable of lying dormant and the effects that it has on the blood vessels. So it's actually the result? Yeah, hold on one second. Lita T 17:32 I know I read the word stenosis and a couple of the different results. Tara 17:37 By patients? Lita T 17:38 Right. So stenosis is is reducing in size, so possibly, the blood vessel size is reduced at the at the bone. Could that be part of it? Tara 17:49 Yeah. It's because it's not getting because of that the blood is not flowing the way that it needs to. Lita T 17:55 Right. Jean 17:56 And I guess most people don't think of their bones as first of all even needing a blood source. Lita T 18:00 Yeah, yeah Jean 18:01 but you don't realize that the osteocytes and, and everything inside your bone that you know that there's constant growth in bone and that it's still... Tara 18:07 I know. Jean 18:08 Yeah, because you think it's like set in stone. But really, it's, you know, part of your living Lita T 18:14 body, Jean 18:14 it's part of your body that's, you know, it's constantly Lita T 18:16 most people don't think about it Jean 18:17 regenerating, yeah. Lita T 18:17 Right, right Tara 18:19 It is. And a lot of people also kind of confused a vascular necrosis, which is also called osteonecrosis, but they confuse it with osteoporosis. Lita T 18:30 Right, right Tara 18:32 Like, Jean 18:32 ohhhh, Tara 18:32 Oh, they're like, you have Ron 18:34 brittle bones? Tara 18:34 osteoporosis. I'm like, it's not osteoporosis. Lita T 18:37 No, no Tara 18:39 It's osteonecrosis. And it's completely different. I went through that, initially, to once I found out that it was the a vascular necrosis, it was very challenging to explain to people actually, what it was, who had assumed that it was osteoperosis, Ron 18:40 Right Lita T 18:40 Different Ron 18:40 Right, right you know, as we're talking, I just, it reminds me and this is going way back, when I was in college, I had done a paper on the banning of...