TSC Talks Revival!! JUSTIN LESLIE of Project Whistleblower ~ Truth Under Fire

This is a special edition, TSC Talks Revival episode with Justin Leslie! Justin is an ex-Pfizer scientist and whistleblower. Justin was also one of my first guests on my podcast “TSC Talks” in 2018, (https://bit.ly/3Iz0FUU) where he shared his story about his experience with diagnosis and living with TSC.

I met Justin back in 2016ish through my friendship with his mother, Dorina Leslie. I had qualified and was training for the Boston Marathon to raise money for Tuberous Sclerosis Complex research and was posting about it on social media. Dorina, who had a son diagnosed with TSC, read my story, “Mom of 3 with TSC Runs Boston” (or something like that) and reached out in a Facebook Group. She was so encouraging and supportive! We became friends.  As I started to build the podcast TSC Talks, she suggested I interview her son, Justin, who had a mild form of TSC. Justin had been diagnosed with this dis-ease, later in life than most, and yet had had some significant struggles he’d had to overcome. Struggles that might be helpful if shared and heard by others in similar circumstances.

So, we did the (first) interview. It was incredible to have this young man who had really struggled with his own mortality and sense of purpose after receiving a TSC diagnosis, come and share from the heart, with such conviction, his lived experience and vision for going to study pharmacology to eventually contribute to finding a cure for this hateful dis-ease, Tuberous Sclerosis Complex. His podcast was a hit in the small community centered around TSC and was an inspiration to many. Flash forward several years. I stayed in touch with Justin’s mom, and she’d tell me what he was up to from time to time. He had such a passion and intensity about him, I was confident he was going to make some important contributions. I knew he had been working at Pfizer, and hated it, & the next thing I knew, he was working with Project Veritas and Dorina couldn’t talk about it. I was like Wow. Then more recently he showed up in my feed in pictures from a retreat he attended with Alec Zeck. What a whirlwind! I wanted to talk to him again.

We connected in January 2024 in a phone convo and Justin filled me in on what had been going on with him of late. I was blown da feck away!!! Not only had Justin been working at Pfizer but had gone undercover as a double agent working for Project Veritas, then again at OMG Media with James O’Keefe. He shared that he was working on a documentary called “Project Whistleblower” and was chronicling in the most riveting way, his experiences and strong soul’s urging to share the whole truth of what he uncovered during these last few years.

I told him I’d love to interview him and catch up on his story since the time he was on TSC Talks. I felt it would be so relevant for both of us as we’d kind of come full circle in seeing the inversions of the systems we’d both been heavily invested in and gone through intense disillusionment, yet come away with a renewed passion for getting beyond all the disconnections, fragmentations, half truths of the systems and get at root causes …for TSC, for dis-ease…so I’m sharing the transcript here from our first interview and will be sharing the transcript from our upcoming interview as well! I think this is incredibly important to Justin’s “story” as it demonstrates the vast transformation in awareness and understanding of the systemic inversion and the trance like spell so many are under regarding the half truths and flat out deception propagated over many years, but specifically since 2020 and the injection of half truths related to just about everything we’ve collectively held sacred.  So here we go…here’s the first interview we did together, both in completely different mindsets and circumstances meeting to discuss the impact of the rare disease, TSC.

In “Project Whistleblower” Justin shares his personal journey, including living with Tuberous Sclerosis Complex (TSC), a condition that not only shaped his childhood but also inspired him to pursue a career in pharmacology, aiming to find a cure for his condition.

During his time as a vaccine scientist at Pfizer, Justin began to collaborate undercover with Project Veritas. This partnership led to the revealing of mind blowing revelations about the COVID-19 ‘scamdemic’ and other alleged misconduct within Pfizer. However, he soon started to observe concerning behaviors within Project Veritas, such as the suppression of timely truths and vaccine concerns. These observations led him to question the integrity of the organization and its founder, James O’Keefe.

In collaboration with Marty Leeds, Justin has produced the compelling documentary “Project Whistleblower.” This film delves into his experiences and his growing awareness of the covert tactics and manipulations at Pfizer, Project Veritas, and OMG Media Group. In an era rife with lies and deception, the documentary underscores the revolutionary act of truth-telling.” (credit to Amanda Vollmer: https://yummy.doctor/video-list/advocates-for-truth-amandha-vollmer-adv-with-justin-leslie/)
Contact info for Justin!
Justin Leslie: https://justintegrity.net/
Justin’s Linktree: https://linktr.ee/justinleslie
Contact: justinleslie3@protonmail.com
Donate to Justin’s work: https://www.givesendgo.com/ProjectWhistleblower

WATCH THE DOCUMENTARY HERE:  https://justintegrity.net/project-whistleblower/
Produced by: https://linktr.ee.com/jillwoodworthhttps://jillwoodworth.com

Short clip produced by @jillwoodworth
https://jillwoodworth.com

TSC Talks Guest Dani McQueen

TSC Talks guest Danielle, Dani McQueen, is a true champion in the cannabis world, business owner, who has been nominated with Best Cannabis Company of the Year, ​Maine Cannabis Activist, Business Leader of the Year, Champion in Corrupt Responsibility, Best Innovation: Hot Cocoa, and Young Entrepreneur of the Year. While that, she is also a mother of a special superhero little girl that suffers from the same autoimmune disease as she does. Danielle demonstrates her rough path but also her strength to follow her instincts, and as every human being, with doubts and uncertainty but reaches an amazing lifestyle for her family while also helping other families. She shares a story of overcome but also the real struggle as a person who suffers from Ankylosing Spondylitis. Danielle just really uprooted herself and moved to Maine to help her child and herself. I’m just very impressed with what I’ve learned so far. Danielle shares her story timeline with us on the next few quotes.

“I always knew I wanted to help people. At an early age, I also knew something was wrong with me too. I had gotten into a little bit of trouble at school. I love the gymnastics part in flipping and I thought I could do this. But I also started to realize that I was getting pains, you know, and everyone kind of chalked it up until I was probably around 16, when it really started to affect me. By 17 years old I started, you know, I’ve seen every doctor. I’ve been diagnosed with lupus, rheumatoid arthritis, to everything. So, being diagnosed with so many diagnoses, it’s just because it was kind of unknown. It was a little by 18 when they had known that it was Ankylosing Spondylitis and I was put on oxycodone.”

“This next month, I’ll be going into my third surgery, they’ll be doing a full fusion from the cervix down. Just because I’ve had so many slipped discs and fractures that are kind of just deteriorating. So I’m a little nervous.”

“Every time something like this happens I think of my daughter, what her future might look like. Because like I was saying, when I was a teenager, they put me on oxycodone and it helps, of course. Back then, these drugs were just coming to market. These doctors were taught by the pharmaceuticals that these were lifesavers or they were for some people, I’m not denying that fact. But for me, being so young, I probably shouldn’t have been put on oxycodone. Over time, it stopped helping. And at this point, I was in college and I was going to school to be a nurse and now at this time, after oxycodone, I’m put on the fentanyl patch and this I’m using with  the oxycodone. The fentanyl patch and the oxycodone. So now I’m in school and I’m learning in the medical world. And I start to learn that maybe I shouldn’t be on these doses. Maybe I shouldn’t be on these medications. Maybe it’s okay to question the doctors.”

“I was a manager of a Suboxone clinic a few years ago, and I thought to myself, I was no different than these people, except they went to get their drugs from the street; I just had to go to my doctor. She’d write me a prescription and I’d be on my way. I mean, there was no difference to me.”

“I just felt something was wrong. I feel really guilty saying this. One time I’d walked into my doctor’s office to get a prescription. There were a lot of people in police uniforms and there are people carrying boxes and the nurse was really sneaky about getting me into a room. I don’t remember seeing the doctor that day. I just saw my prescription. And I was in a haze. I feel like from 18 to 22 I literally feel like I don’t recall a lot of how I managed to graduate school and do the things I did in that time period, still amazing to me. But that next day I read in the newspaper that my doctor was under investigation for overprescribing narcotics. There were a lot of overdoses in our town at that time. And this doctor was connected to them. Well, next thing I know I’m being called by the board of medicine because my medical records have been found outside of her office being disposed of. So now I’m caught in this, ‘I’m addicted to drugs. who’s going to supply my drugs now. This is so embarrassing. It’s in the newspaper. I’m in the medical field.’ I went through this stage of full-blown depression, I didn’t know what to do on my bed. Thankfully, it was a time of my life- life has given back to me because I had no choice other than to either go to the streets and become a drug addict or detox. And I don’t recommend detoxing at home, but I was too ashamed to go to the same hospital I worked in. And so I detox at home. The worst 14 days of my life. Pain I never felt, sickness and things I’ve never felt before, and I wouldn’t want to ever again. I think that’s why I’ve stayed off of narcotics because that feeling I remember of coming off of them. On day 15 I remember my younger brother offering me a joint and I was mortified. I was like, whoa, how dare you!”

Yeah, the recovery movement. They really were not very pro-cannabis. In fact, I dropped out because they weren’t. I was in an addiction. I was going back to school to become an addiction counselor and they passed around this magazine with marijuana on the front of it like it was the worse thing, and I was sitting there and I had just started using. I felt so guilty and it was helping me and I was getting off meds and I was like, I can’t do this. I can’t get off.

“I get it. I was mortified. And then you know what, I did it because what was the other option? I was so sick, I was so sick, and all of a sudden I feel better, and how do we get more of this stuff? You know? So here I am. I work at the hospital. I’m using my younger brother to go buy me marijuana, you know, like, mortifying, but then I started to realize this is going to help. This is going to be the thing that helps me. And it started to help me and then I started to want to help other people. I got a job at a Suboxone clinic and I wanted to help people. I just thought that I could save the world. Then I started to realize I’m drug testing these patients. They are coming back positive for THC and the doc says, ‘that’s okay, Danny. No big deal. They come back something else that’s a problem.’ And I’m thinking why is this not legal? Why aren’t we just using it? Why can’t we give them weed because here I am… I’m smoking cannabis every day. It’s helping me stay clean, function with my disease, I’m treating these patients, and I’m hiding the fact that I probably smell like it. They thought it was them. It’s me the whole time.”

“Then you know what I got pregnant and there was no more I could hide it. There was no more of ‘I had to be quiet about it’ because Harley Rose, in 2015, early on, started to show symptoms of something and nobody knew what it was. But one day I went into her crib, she was stiff as a board. I picked her up and she was very hard, and her joints were very red and she had a fever of 102 and I knew right at that moment that I had genetically passed down something to her. It was the worst day of my life.  I just thought everything was like flashing. Everything I had gone through and I blamed… I blame myself. Her pediatrician was great. Quickly after the test they found out she had A.S. And right then it was like a whiplash.”

“I was very angry at this point, more at myself. I think Because I just felt like this is all my fault. I gave this to her my child’s gonna have to endure all the same things I have. So I was very scared and then like I said it was like a slide. they just wanted ‘Let’s do this. Let’s do that.’ And I said ‘let’s do none of it! What can I do herbally?”

“The doctors were not supportive of anything alternative. And about a week went by from the diagnosis and I was sitting, probably on a Friday and watching her and her body, she just hurt. You could tell, and I didn’t know what to do. And I had a prescription for pain medication and I was holding it and I just knew, I just knew I couldn’t do it. And within days, you know, we had quit our jobs. We had packed our home up and we had found a place in West Baldwin, Maine. And we didn’t have any jobs here. We didn’t have anything, only the hopes that somebody was going to help my daughter. And we left. We met Dr. Dustin.”

“I probably sounded like a lunatic. You know, I just said ‘please, I know you’re not accepting new patients. I need you to help.’ And within probably 24 hours, 48 hours, there was a callback. We had an appointment within days. We went in and I was terrified because still at this point didn’t want to give her the cannabis. I don’t know. I thought maybe this guy was just going to be able to give her an herbal. I don’t know what I thought. Honestly, I don’t know what I was doing or what I thought. I was so scared. He was so wonderful. He was like this white light come over us and we started her on cannabis and she started to do things you’ve never done before. I’ll never forget the day she took off running, jumped on the arm of the couch and Ninja flips.”

“And I thought, ‘do it again!’ My sisters would look at me and give me that look like ‘you shouldn’t be letting your baby do that.’ But I did I let her do things that maybe you shouldn’t have done.”

“I thought, maybe she’d been trapped, you know. So at that moment, the stigma for myself, you know, here I was, it was helping me but I still was scared to give it to my child. Then I gave it to her. She’s remarkable.”

“That’s when it was like, game on, world! Because if I’m doing everything, teach me how to grow, teach me how to grow cannabis, teach me how to do everything about cannabis.”

“And then I started to help one mom, and then that started to be two moms. And then it just really grew. And I never connected my business name with who I was as a mom helping these women. You know, I never wanted it to be combined. Now I have moms that I helped years ago say to me, ‘did you own this company back then?’ And I’ll laugh because, yeah, I did. But I just wanted them to know I was just like them. I just remember having nobody. I had nobody here. I was so depressed. I had left my mom, my sisters. I was a brand new mom myself. I didn’t know what I was doing. I didn’t have that. We were hours away from everybody we knew.”

We also opened up about the transitions that had to be made because of COVID19. Some of the questions we discussed were, ‘What has been the biggest challenge in the recent Coronavirus? How have you guys gotten through?’ Sounds like they are pretty well versed in their own, boosting their immune system and all the things that we can do.

“To be honest, I was terrified at first. Right at the beginning of it happening she had an EG to go into. We had tests like back to back. And some things that we had to go. So all of a sudden, they were kind of saying ‘you can come if you want to,’ but I’m watching the news, I’m terrified. I kept her inside completely. We couldn’t stop working, sadly. But we would protect herself as much as we could. We change our clothes outside. We would shower right when we came in, but I mean, she still had to go to doctors. So if she was really going to get it anywhere, it would probably be from there.”

Danielle really highlighted something that is important to me and it’s just like the connection that she has with what she’s doing and everything in her life. It seems like she kind of found her purpose and passion. I asked her ‘How do you see the future with your business? Any challenges so far?’

She gladly mentioned how strangers have impacted her life and helped her gather her strength in the hardest times.

“I just honestly want to help people. I just have to. I feel like if anything, my disease, my illness, my daughter’s illness. If it was given to us for any other reason, it’s totally because we can someway change somebody else’s life.”

I think going through something like that where you’re in a situation that really can’t be changed, it presents challenges that are really hard to endure by yourself, it changes you in ways that your whole purpose and meaning kind of shift. I think I’m coming to that kind of conclusion a lot later in life. But you can’t second guess that you go through what you go through to grow through or whatever cliche you want to use, but, I think it puts things in perspective when you look back and I think about the things that didn’t work out and what was down the road that made more sense and kind of brought things together. I can just relate to that. It’s about trying to help my kids and help other people that are just trapped in these disease situations where  they feel there’s no choice but pharma pharma, you know, locked in.

“It’s really sad. I just had a scan done a month ago. They came in I had just had days ago, and they said, like, ‘Danny, there’s 13 new fractures. You have to stop being stubborn and we have to get in there and we got to go operate.’ I’m the worst patient ever on work. But he says to me, ‘I gave you a drug screen. And you really did only test positive for cannabis.’ I start laughing so hard. I go, ‘did you think I was lying?’ And he goes, ‘I don’t know. Yeah, kinda because I thought …How is it that you’re functioning like you are.’ I kind of laughed, but I sent him, ‘I hope this is a learning experience for you that all I have in my system is cannabis. And here you are as a doctor saying, I should not be functioning without narcotics and you thought I was lying.’ And I said, ‘I’ll give you a deal if you want to start smoking cannabis,’ and he started laughing. It’s like that was a learning lesson. How dare you first of all drug test me, I told you I didn’t take drugs. I smoke weed, you know. But you know what? That moment I didn’t get mad about it because I hope the next patient he sees he’s run out of options for that person. He’s putting them morphine, and there’s nothing that’s helping. Maybe something click that says I met this girl one time, that’s way worse than you and all she did was smoke cannabis or eat cannabis and one life can be changed from what he saw.”

Website: https://www.oldmanfarms.com/

Instagram: https://www.instagram.com/oldman_goodies_llc/

Facebook: https://www.facebook.com/oldmangoodiesllc/

Thank you, Amora Correa, for your awesome job writing this blog!  We are thankful to have her as part of our team.

TSC Talks Guest Sherri Tutkus

TSC TALKS GUEST SHERRI TUTKUS

In this episode, my guest Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group, came on the podcast to share a powerful and inspiring mother/son story that follows the timeline from receiving a diagnosis at birth of her son Nicholas with Branchio-Oculo-Facial Syndrome through current day. Sherri gives one of the most powerful illustrations over the course of the episode, of a mother’s love, courage, compassion, resilience and tenacity that I’ve ever heard, and is a fantastic example of holding onto presumption of competence as a guiding light, against all odds.

Sherri Tutkus is the founder and CEO of GreenNurse Group, Nursing Director at Irie Bliss Wellness and host of GreenNurse on the Go Radio Show. Sherri is a cannabis nurse, patient and advocate. She earned her Bachelors in Science and Nursing from Boston College. She is highly skilled Registered Nurse with 30 years’ practical experience in various departments within the hospital and home setting. She is utilizing her expert nursing skills as a medical center specialist, clinical nurse liaison and educator to bridge the gap between patients and the cannabis community. Sherri has been educating and implementing holistic integrative healing modalities within her practice for over 20 years. She educates on the endocannabinoid system and the safe utilization of cannabis at dispensaries, hospitals, clinics, patients homes and she regularly does pop up events, seminars and expos. Sherri is an international speaker and she has contributed to the writing of the first cannabis nursing textbook with her cannabis nurse colleagues that will be available in nursing schools across the country. Sherri is a member of the American Cannabis Nurses Association and founding member of The Cannabis Nurses Network and was nominated as one of two nurses for “Health Professional of the Year” for the 2020 New England Cannabis Convention. Sherri brings passion and purpose to her work teaching bio-psycho-social-spiritual healing using cannabis as a tool.

In the first part of this podcast, Sherri discusses her own background and connection to cannabinoid medicine. The tools she learned in her own journey enabled Sherri to cope with frequent and ongoing surgeries, procedures, treatments for her son Nicholas and advocate vociferously on his behalf.

“When I’m presenting to people, I use myself as a case study. Because basically, prior to me getting ill, I had a history of migraine headaches, ADHD, and anxiety, that was managed with traditional medicine. I was functioning, I was healthy, single mother of three, child with a disability that we’re going to talk about, but knowing that I had migraine headaches and at ADHD symptoms should have been a clear indicator that I had an Endocannabinoid deficiency. So everything that we do or don’t do in our lives as far as health and wellness affects this neurotransmitter signaling system called the endocannabinoid system, and that the job of that system is to bring balance.”

She goes on to explain, “By the end before I discovered cannabis. I was on over 16 pharmaceuticals. So, as I’ve learned over time, if you’re taking more than 10 pharmaceuticals, there’s 100% chance of having an adverse drug reaction. Polypharmacy. I fit into that polypharmacy category. I am not anti pharma. However, what is really essential for people to understand when they are being prescribed pharmaceuticals is to ask those critical questions and to look at what side effects there are to look at the blackbox warning Okay, how many people have died? You know, what are the side effects, what are the adverse effects, you need to have knowledge knowledge is power. The other thing that people People don’t realize is that a lot of pharmaceuticals have a drug nutrient depletion”

She goes on to explain, ” I have have a history of Polycystic Ovarian Disease which is very interesting. And that yeah, that is considered to be a clinical Endocannabinoid deficiency diagnoses as well. So I had issues with fertility all along. … And then my third pregnancy… it’s interesting, you know I gained all kinds of weight and wasn’t happy and I started changing my lifestyle when the babies came. And all of a sudden my reproductive system started to auto regulate. I was using specific supplements and nutrition. I changed my diet, I became vegan, I did a raw diet, and all of a sudden, I’m a fertile Myrtle. And before we know it, I’m pregnant with my third”

From here, Sherri goes on to discuss the birth of Nicholas and the immediate realization that he had multiple issues of which she was not aware of up until the moment of his birth. She explained to me in writing prior to the recording of this episode, the following, “All of my births were traumatic experiences however this pregnancy was the best and the easiest. I had an uneventful healthy pregnancy. I broke my water 6 weeks early and when my first boy was born he was not breathing and they had to resuscitate him and over the course of my first postpartum days I learned that my son had a rare genetic disorder called Branchio-Oculo Facial Syndrome.”

BOFS is inherited in an autosomal dominant manner. Each child of an individual with BOFS has a 50% change of inheriting the variant. Nick’s dad carried the gene and at the time of diagnoses the gene had not been identified.

She discusses the realization of impact, “you have these craniofacial anomalies that required over 15 surgeries, but the things that they said about mental retardation was not true. The surgical stuff they were able to do . I engaged upon a journey with him that I would do anything for him. It was kind of like, I just got to do this. And so he became my full time job. ”

I asked Sherri the question, “How did you do it? How did you handle this huge weight of reality repeatedly?” She explained, “I got back to really the basics of self care and being present and grounded. I had already have a lot of those spiritual tools. My son opened up the door to the unseen worlds for me, which is a whole other show. But literally, I kind of felt like and I know it sounds crazy, but I’m sure other mothers can agree or associate or identify…. that I just felt a really strong connection with him and being able to understand what his needs were even before he could communicate.”

She goes on to add, “it gets back to what I can and cannot control you know, even if I can’t control my emotions, even if I’m out of control, like hysterical or anxiety-ridden or sad, I still can have the ability to control what I’m doing and not doing in my life. And so what I knew to be true was in order for me to be the best version of myself, I needed to do everything that I could to take care of myself. And that included my mental health.”

She goes on to say, “But he’s a true miracle. I gave him every opportunity. And he basically showed me through his own actions and his kindness and compassion and his grit and his ability. The kid had so much resilience and he wanted to heal, you know, he’s not mentally retarded, he got set up with the Deaf Services as we found out later, he doesn’t have sensory neural hearing loss, he has a bone conduction hearing loss. And so he basically told me one day Mom, I want to smile with the rest of the kids. And I was like, oh, of course you do. How do I make that happen? And boy, that was a scary journey. We literally embarked upon the journey of having my boy get a smile.”

“The amazing craniofacial team at Boston Children’s Hospital did an experimental surgery that is called facial reanimation. And basically they didn’t know. They said it would evolve over time, would the nerve take and would it connect and would it work? So here we are… I don’t know here we are going. Through 16 hours of surgery 10 days in the hospital, not knowing if this is going to work or not. That was another faith based thing. Honestly, you know, it’s all you have, and then literally one morning when I was waking him up for school, all of a sudden he sits up in bed. He smiles. So he’s really he’s come a long way. He’s 14 years old now. When he was in sixth grade, he said, I want to go to public school. Oh my god, how is he going to be able to go to public school? So I was like, Okay, let’s try to make it happen. And we embarked on the journey of integrating him into the public system.”

Bringing us to current day, Sherri explains, “You know, he is thriving. He’s finishing up the eighth grade this year. And his freshman year, next year in high school, he will be in the public school. He still has an IEP, he’s going to be in all honors and advanced honors classes is number one subject Spanish. And one of the other thing is that, you know, oftentimes as parents, we may feel sorry for our kid and you may feel bad. He doesn’t feel sorry for himself. He doesn’t feel bad.”

A final quote, “So what can I control? I try to control other people. And we can’t control anyone. We can’t. And that’s the part that was the biggest lesson that I learned. And he taught me that, he taught me where my power lies and where it doesn’t lie and how to choose and pick my battles and what’s important and what’s not important. And in the grand scheme of life, when you can pull back from that and see, what am I doing to be the best version of myself, so I can help my child thrive?”

Sherri’s links:
Green Nurse Group: https://www.greennursegroup.com/
Facebook: https://www.facebook.com/GreenNurseSherri
Instagram: https://www.instagram.com/sherri_tutkus/,

https://www.instagram.com/greennursegroup/
Twitter: https://twitter.com/Green_Nurses
LinkedIn: https://www.linkedin.com/in/sherri-tutkus-rn-bsn-912b7776/

All of our podcasts can be found at https://tsctalks.com/podcast/

TSC Talks guest Sherri Tutkus

TSC Talks Guest Brooke Alisha

TSC TALKS GUEST BROOKE ALISHA

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promoter. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope.

Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn’t get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”

She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I’m like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?

After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they’re like, um, you’re pregnant, and we’re going to put you on Prozac because we don’t know if you’ll handle the baby or if you’ll keep it or anything”

To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn’t okay with that. It wasn’t how I grew up personally. And I thought, there’s a reason I’m having her. So, I’m going to just have her and I’m going to get through it. And if I lose her, then it’s meant to be I had to live with myself personally.”

Her baby daughter started having infantile spasms at 4 months and was diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”

Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don’t remember the details. It’s like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don’t know if it was like that for you, but I didn’t have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”

Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it’s a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn’t going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”

She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!

“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn’t even know what it was, and I feel like it’s not talked about enough. It’s not expressed enough. It’s not shown to families like okay your child might have TSC but look out for TAND, they need to be prewarned for this because you have no idea it will come hit you like a bus.”

Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I’m going to take care of something, I’m going to take care of it the way it needs to be taken care of. How do you take care of that? I didn’t know how to take care of that situation. That moment. Everybody’s lives are in danger. My son was being choked from the back. It was very traumatic.”

So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise.

“And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn’t going to live there anymore. And once you decide that you must be at a really big place where you’re like, you know, I’m ready. Because you’re going to get tested and you’re going to get tried, and it’s going to try to break you, but you have to just rise up really. But you have to be at that place, and I can’t tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”

Brooke uses premium nutrition, continues to consult with her doctors, and this system has worked for her, Thrive, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.

This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!

“I mean, there’s been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that’s been amazing, but just the miracle of being 36 now and being told at 30 I’d be in a wheelchair like that’s a miracle. And when people see me and do that stuff, I want them to know that it’s never too late. You still have a life to live!” Bravo Brooke!

Brooke’s links:
Instagram: https://www.instagram.com/_brookealisha_/
Facebook: https://www.facebook.com/brookey21
Twitter: @BrookeAlisha
Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/
TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/
Brook’s hair services: https://www.facebook.com/brookesbliss13hair/
https://www.facebook.com/thecolourpalettesalon/
Thrive/Le-Vel: https://brooke2330.le-vel.com/

TSC Talks Guest Brooke Alisha

Thank you for listening.  All of our podcasts can be found at www.tsctalks.com/podcast/

TSC Talks Guest Blaze Therapeutics

TSC Talks Guest Blaze Therapeutics

Nadia Bodkin, CEO and Vincent Crowley, SVP of Blaze Therapeutics, LLC are an incredible team bringing a rich and relevant background of lived and learned experience across multiple special interest groups, including the rare disease community, military & veteran community, as well as health care community and more.

“Blaze Therapeutics exists to offer plant-based solutions to the rare disease, the US Veteran, and professional medical communities that target the improvement of overall health, wellness, and quality of life. We believe in amplifying the beauty of life through the pursuit of wellness. Blaze Therapeutics is comprised of a team of experts concentrated from the healthcare, patient advocacy, nutraceutical and cannabis industries. Blaze Therapeutics is engaged in supporting the open market through Responsible Distribution of plant-based dietary supplements and the Rx market through the pursuit of FDA approved cannabis-based nutraceuticals.”

Nadia is also President at EDSers United for Ehlers Danlos Syndrome and is also a member of the advocacy movement in regards to Blaze. Nadia is a seasoned rare disease patient advocate, born with three main rare conditions herself. Immediately after graduation, Nadia went straight into advocacy through EDSers United, a foundation she founded as a student. Nadia has held leadership positions at several rare disease advocacy focused organizations assisting in everything between nonprofit corporate management to event planning to therapeutic product development. She is also one of the founding members of New Love Ventures LLC and facilitates the coordination of the Rare Advocacy Movement’s activities along with fellow colleagues.

Vincent Crowley, Senior VP, is a medically retired veteran of the United States Army. His past experience in the army was as a dental hygienist. He also studied psychology at the University of Maryland. Vincent is co-founder New Love Ventures. During his years of service, Vincent discovered a heightened awareness for his core values, and beliefs (i.e loyalty, duty, respect, selfless service, honor, integrity, and personal courage). Incorporating these core values into his daily life and his passion to help other service members navigate life post-military service and transition back into the civilian sector, spurred an interest to earn a degree in Psychology and Mental Health. As a student of the University of Maryland University College, Vincent makes himself available to veterans seeking guidance through social media platforms and in-person meetings. As the Executive Sales Director at Blaze Therapeutics, Vincent is leading the effort to introduce the military community to Blaze Approved nutraceuticals and therapeutics as alternative options to addressing their health concerns.”

This episode is rich with information. A few pertinent quotes:

“We both connected over our passion for advocacy work. And his focus has always been on advocating for veterans and helping them transition into civilian life. And after meeting and gaining a better understanding of each other’s advocacy work, we learned that both the veteran and rare disease communities are both dealing with very similar socio-economic and healthcare issues.”

Discussing the responsible distribution of CBD:

“Responsible distribution model is a model designed specifically for the healthcare industry for cautions taken to protect customers’ safety and ultimately protect businesses from potential liability issues. And because the cannabis industry is young and vulnerable, unfortunately, most of the products on the market are contaminated with toxins and labeled inaccurately. So products that are responsibly distributed, come with a certificate of analysis that are unbiased third party tests.”

Talking about other products in the holistic industry:

“The overall holistic products industry includes, you know, the spices that we use to season our foods and a lot of our spices have silicone in them. And a lot of our chronic pain is caused by all the different products that have so many toxins that are building up it’s increasing our inflammatory system, our bodies are trying to fight all these toxins. It’s incredible what we found”

Discussing the role of big pharma and the open CBD market:

“Big Pharma and responsible players from the open market industry can collaborate and work together. When it comes to educating the public and the healthcare industry, doctors need to know what options are available to them and the unfortunate risky realities of the open market so that they can best advise their patients. And consumers need to know that they need to consult with their doctors to identify their personal dosage of CBD, what to ask for and what to avoid when navigating the open market in order to avoid purchasing toxic or fraudulent products”

Regarding the controversy with newly FDA approved CBD isolate medication, Epidiolex:

“And so one of the hot topics that has been circulating the rate of the space currently regarding Epidiolex include sucralose as an inactive ingredient. Because of this, we’re seeing some parents and patients with rare epileptic conditions choose to turn to the open market as opposed to taking Epidiolex either on label or off label because of the sucralose, which is an artificial sweetener found in the formulation.”…” sucralose significantly decreased beneficial gut bacteria, negative effects have occurred at a sucralose dosage as low as 1.1 milligrams per kilogram, and FDA acceptable daily intake for sucralose is five milligrams per kilogram, so several individuals with GI issues do their best typically stay away from this artificial sweetener”

Continuing this conversation and discussing how doctors can take advantage of what Blaze Therapeutics has to offer:

“So for those practitioners in states with medical marijuana programs, of course, they can manage medical marijuana patients, they can prescribe Epidiolex to patients with certain types of severe epilepsies or they can choose to responsibly distribute CBD by signing up as a wholesaler at Blaze Therapeutics and selling CBD directly to the patients in the office or they sign up under our referral program, the and they receive they receive a percentage of the revenue per order that’s made.”

On New Love Ventures, LLC:

“So a little plug in there for new love ventures and basically what we’re doing with new love ventures. It’s a new love culture, it’s a social movement to help people bring awareness to themselves and being human, you know, looking out for their, their fellow person, regardless of what they’re doing in their lives and what they believe in”

There is a large amount of detailed but well-explained information contained in this episode. A final quote on how we as patients can ask doctors to enter the conversation which is of utmost importance:

“Can you please reach out to blazetherapeutics.com and the people there or just call that company and then we will help educate them in an expedited, then we understand their busy schedules, we will provide them with the materials in order for them to learn what they need to do in order to help their patients. Right now the stigma within the health care community has dwindled. There’s enough clinical evidence out there for cannabis. So now doctors are actually learning ”

Thanks for listening! For more information, see the following links:

Website: https://www.blazetherapeutics.com/
Website Resources: https://www.blazetherapeutics.com/resources
Facebook: https://www.facebook.com/blazetherapeutics/
Instagram: https://www.instagram.com/blazetherapeutics/
Twitter: https://twitter.com/blazetherapy
LinkedIn: https://www.linkedin.com/company/blaze-therapeutics/
New Love Ventures: https://www.newloveculture.com/
Nadia on LinkedIn: https://www.linkedin.com/in/nadiabodkin/
Vincent on LinkedIn: https://www.linkedin.com/in/vincent-crowley-a87a1a55/
Nadia Bodkin Rare Advocacy Movement: https://www.rareadvocacymovement.com/nadia-bodkin

Thanks for tuning in!