Episode 27: Revolutionizing Multiple Sclerosis Treatment: The HSCT Narrative

Di: 0:23

Hello and welcome to BodyHolic with D, episode number 27. My name is Di Katz Shachar and I am a public health promoter. I'm a fitness trainer with over 17 years of experience and I hold specializations in corrective exercise, women's fitness and Pilates. I'm the founder and trainer of Bodyholic, the global health and fitness platform and community, and I'm the author of the book Rip it Up For Good.

Di: 0:48

This podcast is a part of my effort and mission as a public health professional, because I believe that real science based information and knowledge is power, and my job in this life is to empower you. I want you to have high and sustained energy throughout the day and I want you to feel better than you have ever felt before during and after your workouts, in and out of your clothes, and not only physically, but mentally and emotionally as well. Today's podcast interview is with Parmjit Kaur, an entrepreneur, executive vice president at PMI Southern Nevada chapter, a member of the National Speakers Association, nsa and Patient Advocate. I had the absolute privilege to talk to her about HSCT hematopiotic stem cell transplantation and its use in treating multiple sclerosis, ms. This discussion can be life changing for MS patients, so I invite you to share this episode and get the message out there.

Di: 1:50

On a more general note, Parmjit is such an inspiration. I feel a true warrior and I believe that, in fact, anyone would enjoy and benefit from the energy, hope and strength that she brings along with her. Enjoy, welcome, welcome, Parmjit Kaur. I am so excited to have you here. I really, really am. Thank you so much for being here.

Parmjit: 2:18

No, thank you for having me.

Di: 2:19

I appreciate you. It's really a pleasure and I think everybody is going to see how much of a pleasure it is to have you in just a moment. Basically, we're here to really talk about specifically the hematopiotic hematopotic how do I say that?

Parmjit: 2:44

You know it's funny. I can never say that word correctly, no matter how much I practice. So it's hematopoietic stem cell transplantation. You actually said it.

Di: 2:56

You said it better than any professor. I've ever heard the way you said the poi and I've heard I think I often hear hematopiotic or something like that.

Parmjit: 3:12

Yeah, I've heard many different versions.

Di: 3:15

Right, so okay, so in my version it's going to be hematopiotic, in my version Hematopiotic stem cell transplantation and it's used to treating multiple sclerosis, ms. So this is really, really interesting to me because basically it's a treatment that is not meant for MS that happens to work very well for MS. Am I correct? Correct? Yeah.

Parmjit: 3:44

The treatment initially came out in the 1950s and the treatment was initially done on leukemia patients. So a doctor initially had a group of patients that he tried the treatment on and so the thought was that it would be for leukemia patients and eventually they learned that the treatment also works for autoimmune diseases, specifically MS.

Di: 4:16

Yeah, that's very interesting, and can you basically expand a little bit on an overview for the what we're going to call it HSCT from now on and how it works as a treatment for MS?

Parmjit: 4:30

Sure, absolutely so. Hsct, it's an intense chemotherapy treatment. So it's an intense chemotherapy treatment for MS, and the goal of HSCT it aims to reset a patient's immune system by basically ablating it or wiping it out and then regrowing it using a patient's own stem cells. The thought process behind HSCT is that, for MS specifically, that the T and B cells in an MS patient's body have essentially gone rogue, and so those stem cells, those cells, I should say need to be wiped out, and then the immune system, using chemotherapy, needs to be rebuilt and the immune system has to start from scratch.

Di: 5:18

Yeah, that's. I mean, that's mind blowing actually, but to really kind of grasp that and it's also, would you mind saying a few words about yourself and why you know so much about it? And that's actually what's blowing my mind. And so maybe if you don't mind saying a few words, because I do know a little bit of the back story and what I'm thinking to myself right now is how incredibly brave you are- oh, thank you, I appreciate you. So, if you don't mind, Sure, sure, absolutely.

Parmjit: 6:02

So. I was diagnosed with multiple sclerosis myself in 2008. So in 2008, I was diagnosed with MS, and at the time when I was diagnosed, treatment only came in injection form. So there were a lot of therapies that were meant to suppress the immune system, because the thought was that the immune system has essentially gone rogue and has started attacking the nervous system, as if the nervous system is a foreign entity within the body. And so there were a lot of therapies at the time, a lot of treatments at the time that were meant to suppress my immune system, and I was on many of them and, fortunately, a lot of these therapies.

Parmjit: 6:47

There is two things about these therapies. One, they only slowed down the progression, so there was no guarantee that these therapies would stop the progression of the MS, and on top of that, they had a myriad of side effects side effects that included suicidal thoughts, side effects that included flu-like symptoms and a lot of aches and pains, and so I was on medication for a number of years. But although I was on medication, my condition continued to deteriorate, and in 2016, my prognosis was that I, more than likely, would be in a wheelchair by the end of 2016, probably 2017. And back then, just to give you an idea of just how dire my situation was, I couldn't even walk down a flight of stairs unless there was a railing to hold on to. There were just so many things that I couldn't ride a bike anymore. I couldn't run anymore, forget about heels. I was completely out of the question. I was, my condition was severely deteriorating and I knew at the time that there had to be something else out there.

Parmjit: 8:11

And that is when another patient who had had HSTT she actually was part of a trial done at Northwestern University Hospital in Chicago, pioneered by Dr Richard Burt. She was part of that trial and she was a success story and so she told me about HSTT, which I never heard about it.

Di: 8:35

She personally told you about it.

Parmjit: 8:37

Yeah, she personally told me about it?

Di: 8:40

How did you find her? How did you reach out to each other?

Parmjit: 8:43

Sure, great question. So I am part of a, or I was a part of a huge MS community on Facebook and so I had befriended. Soon after my diagnosis, I joined a lot of support groups on Facebook and she was part of one of those communities and so she and I became a pretty fond of each other, and so she. So every time I would end up in the hospital or I would get sick, I would post about it. I'm a very let me backtrack I'm an open book and so anytime I would get sick or I would go through something, I'd posted about it on Facebook. And so she saw my journey. She saw whenever I would end up in the emergency room or I would end up sick and so, as as a friend, she recommended HST to me because she knew how much I was suffering and she knew the relief that HST provided. Mm-hmm.

Di: 9:43

Wow, and so then. So, okay, you found out about it and then you turned to Northwestern, or did you? Was it offered elsewhere?

Parmjit: 9:54

Yeah, it was offered elsewhere.

Di: 9:56

So I did initially turn to Northwestern University Hospital, and so but I'm asking I'm sorry, I just I'm like I'm really getting into the nitty gritty because also I find it Fascinating like I'm going way off, you know topic of the questions that I had that are more technical no, but I think I think that your journey is Really really important and I think so many people can actually benefit from those steps. So I hope you don't mind that.

Parmjit: 10:26

No, okay, no, not at all. Not at all. Feel free to pivot and Different as you need to.

Di: 10:35

Okay.

Parmjit: 10:37

Yes, I was. I did initially apply to Northwestern University Hospital to be part of their clinical trial, but unfortunately I it wasn't that I was an exception to the clinical trial. I Could have been accepted. But my and I will be completely honest, I was afraid my disability was progressing and Northwestern University took a little bit of time and getting back to me and no, no fault of theirs, they just took a little bit of time getting back to me. And I was afraid because, again, I was watching my disability progress.

Parmjit: 11:15

And also then I had the thought that what if I am not accepted into this clinical trial? That I would then maybe have to seek my insurance company to cover the treatment, and at the time not all insurance companies were covering the treatment because the treatment was not FDA approved. So because of this, I started seeking other Other countries in which the treatment was taking place, and I happened to find Mexico, and In Puebla, mexico, they were doing the treatment at a place called clinic a Ruiz, and clinic a Ruiz is run by Dr Ruiz, who is one of the top 20? Alumni at a Mayo Clinic. And so and so I started talking to other patients who had gone to Mexico for their treatment and I heard nothing but great things, and so I applied to Mexico, as I'm waiting to hear back from Northwestern, and I got approved almost immediately. Wow. And so when I got approved, it was for me, it was With. Without a second thought, I knew, okay, this Mexico is where I need to go. Mm-hmm.

Di: 12:26

Mm-hmm. Yeah, you show up, you show up to Mexico and you basically and this is why I think you're so brave you basically say All right, I'm gonna go for this well-known cancer treatment and that that has been used for decades, and and I'm just gonna clean out my, my blood system, basically, and start from scratch, yeah, yeah and then how long did that take? Like what? What was the process there? Did you have to move there for a while? What?

Parmjit: 13:06

Yeah, I did. And great question. So I I did. I had to move to Mexico for 28 days. So I was in Mexico and I want to share the cost because there's, you know, there's, of course, the cost associated with it.

Parmjit: 13:19

So, again, one of the reasons that I chose not to Pursue HST in Chicago was number one.

Parmjit: 13:27

I was afraid that I might, might not be Accepted into the clinical trial, and the clinical trial was ending anyway. By the time I found out about it, the clinical trial was coming to an end and to I thought to myself, well, if I can't get engine, so at the time I just got laid off of work and so I didn't have health insurance. And then I thought to myself Well, I don't have health insurance, so if I were to pay for this treatment out of pocket, the cost was upwards of $200,000, and I don't know about you, but I definitely did not have $200,000 laying around. And so in Mexico they were doing the treatment at a fraction of that cost, and so the cost in Mexico at the time was 54,500. So what I knew? I was gonna go to Mexico. I started fundraising. Unfortunately, I did not fundraise as much as I'd hoped, so my father at the time had a life insurance policy which he took out alone against, and so he got me the money for the treatment.

Di: 14:29

And it was worth every dollar.

Parmjit: 14:31

Oh my gosh, absolutely I would do. Hopefully I would never have to do it again, but if I had to do it all over again, I would absolutely do it all over again.

Di: 14:39

Is that? Is that even a possibility? I?

Parmjit: 14:44

If so, it's not, but you, Once you have the treatment, it's supposed to be a one-and-done. You're not supposed to ever have to need to get HCT again. However, there are some patients that have had to get HCT a second time because, for whatever reason or for whatever circumstances there the MS has come back, so they have had to do a second course of treatment. I don't know the exact numbers as far as how many of those patients have had to, but I've only Personally.

Di: 15:15

I've only heard of two patients who've had to redo it Mm-hmm, yeah, wow, and you're in touch with a lot, so I am yeah, yeah, and and then do. Are the side effects similar to? I Mean what we know as chemo?

Parmjit: 15:33

Yeah, so some of the side effects includes include potentially Other autoimmune diseases Coming into play later on. Menopause is also yes, so let me actually backtrack. Losing your hair is another side effect, oh, is that does that? Happen. Yeah, yeah, the. So the chemotherapy that is used for HCT. It is very intense I I want to say that it might even be more intense than the chemotherapy that is used to treat cancer.

Parmjit: 16:07

But, it is a very rigorous form of chemotherapy and so, yes, I did lose my hair. Almost almost immediately, my hair started falling out. Really, yeah, yeah, wow, I, I did. I did go completely bald, I did support the gi. Jane, look for a little bit.

Di: 16:26

I'm sure you're sported a beautiful.

Parmjit: 16:28

Thank you, thank you, um, and.

Di: 16:32

The nozzah and.

Parmjit: 16:34

Yeah, so no, I was absolutely a thing, and luckily so you know. I think you asked earlier how long was I in Mexico. So I was there for 28 days and I did have to take a caregiver with me. And so the good thing is, in Mexico they do. If you do not have a caregiver who can go with you for the entire month, they do offer caregivers that, I think, for a fee, you could I don't want to say rent, because it's that's a human being I'm talking about but adopt a caregiver in a sense, or you could Utilize one of their caregivers. So my brother, my youngest brother, did go with me to Mexico for 28 days and it so. So every time that I got nauseous and I did, I got very, very nauseous while I was there. Uh, he is the one who cleaned up after me, the poor boy. He cleaned up after me, he cooked for me and uh, yeah, he was there with me for the entire, entirely of that 28 days.

Di: 17:34

Wow, wow. And then it just keeps bringing me. I keep like we're so off track because the thing that's going through my mind is just like that's such a brave, incredible move and to just trust the system, you must have also trusted your friend and just be like, okay, this is it. It also just makes me think how incredibly ineffective the other treatments were. Like it was. I don't know if you were dealing with the side effects. You were talking about the suicidal thoughts, and what was the other side effects you had specifically mentioned?

Parmjit: 18:20

A lot of, yeah, the flu-like symptoms.

Di: 18:23

Flu-like right which sounds horrible. I don't know if you experienced that, but it was so the deterioration together with side effects. I mean it just sounds like rock bottom, like that's what it sounds like. I don't know, I haven't been there.

Parmjit: 18:44

Oh, you're right on the money it was. I did experience all those side effects, so I did have suicidal thoughts. I became severely depressed. I was sick every other day. So one of the first treatments I was on was something called rebiff, and rebiff I had to inject myself. I think it was three times. If I remember correctly, it was three times a week. I had to inject myself, and with each injection was I got flu-like symptoms.

Parmjit: 19:13

So, it felt like I had the full on flu and I was miserable. I was miserable and if you spoke to any of those individuals in my life who know me and love me, they would tell you that I became a shell of myself. And I think, tisa, you and I have met. I'm a naturally a very happy, bubbly person and I didn't even recognize myself. I didn't recognize the person that I had become. So side effects coupled with the deterioration of my body, I think that just threw me into this zombie-like, catatonic mindset or state.

Di: 20:01

Yeah, yeah, it's not even your mindset, because that's almost like taking responsibility for that situation when really you're not responsible for that situation. Yeah, it's, wow, wow. So let's zoom into the HSCT, because I mean hearing what you had been through and then going for that and taking what seems to be a brave leap, a risk, and then working so incredibly well. Do you have a shirt that says HSCT I do, I do, there you go, I do, and like you're sporting it. So let's maybe put the spotlight on that a little bit and talk about how did the idea come to apply the cancer treatment to MS and what were the major developments to the approach that made that actually happen?

Parmjit: 21:10

Sure, absolutely. So I do want to share where this process started. So the first allogenic HSCT was actually pioneered by a gentleman by the name of Donald Thomas and it was reported in the New England Journal of Medicine in September of 1957. So this is how far back this goes, wow, yeah. So the most important thing that Thomas found in his work was the power of the immune system to eradicate cancer. And so in 1990, actually, mr Thomas actually won a Nobel Peace Prize for his discoveries in stem cell transplantation in the treatment of human disease.

Parmjit: 21:57

So I just wanted to share that little backstory of where HSCT actually started.

Parmjit: 22:03

And so in 1995, the first transplantation of hematopoam now I'm going to cover the word opiatic stem cells was suggested as a treatment for MS, after hypothesizing that an immune mediated attack on myelin caused pathologic events in MS.

Parmjit: 22:28

And so again, this was Mr Donald Thomas who, at the time, who pioneered this. And then HSCT at the time was clinically pursued in MS based on strong data that was obtained from mouse models, actually mouse models that actually had autoimmune disease, and it was shown that these mice that had these autoimmune diseases suddenly or to have these severe autoimmune diseases, including MS, all of a sudden these mice were I'm trying to think of the exact word. I don't want to say cured, because a cure is not the right word but all of a sudden they were healing. They were healing and that is what Mr Thomas had found in a lot of his studies. And then so after him, I think the, if you will, the baton was passed, and I don't know at which point, dr Richard Burt Burt of Northwestern University Hospital in Chicago I don't know at what point he started doing his studies into HSCT for MS, but here in the US, after Thomas, I believe Dr Burt was one of the pioneers, if not the pioneer to pioneer, hsct for MS.

Di: 24:02

So basically he got that from Thomas.

Parmjit: 24:08

I believe Thomas was the originator and I made the incorrect in saying this.

Di: 24:15

No, but it's very interesting because it went from cancer treatment to mice to then testing it in the 1990s on humans. So you talked about HSCT being having over 85% success rate in stopping the progression of MS. Could you explain? So you did talk about the other treatments from MS, but I'm also interested in the fact that you were talking about the success rate and stopping the progression. But I've seen you when you talk about where you were. It sounds like it's more than stopping the progression. Can we talk about the potential benefits that you didn't want to say cure? You didn't want to say that. It's almost like. Can we get into that a little bit, because it sounds far beyond, at least for you, far beyond just stopping the progression.

Parmjit: 25:34

Yeah, yeah, absolutely. So when I went into this, when I got HST, I was told that HST is over 85% effective in stopping the progression of MS. I was also told that there is a chance that some of my symptoms or some of the disability that I'd incurred or that was prevalent might be reversed. But that's not a guarantee. So again, I was told that the chances of stopping the progression that's over 85%. There is a slight chance you will get reversal in symptoms, but there is not. Again, there is no guarantee. I am one of the lucky few or I don't want to say the lucky few, because there are actually many folks who have been fortunate, who have gone reversal in symptoms.

Parmjit: 26:25

I was one of those individuals. So I went from. I made a joke about heels earlier on in this interview. I talk about not being able to wear heels, and anyone who knows me knows all I ever own has been heels my whole life. And so after my MS progressed, I went from wearing four-inch stilettos to wearing black heels, to wearing wedges, to not even being able to wear wedges anymore, to wearing flats and sneakers, and suddenly I had to start and I did at one point start selling all of my high heels.

Parmjit: 27:05

I say all that to say I now am wearing heels again. I'm back to wearing three and four-inch heels again. I am now walking up and down fights of stairs without needing a railing, almost the way a person without MS might. We walk up and down a fight of stairs without giving it a second thought. And that is how it used to be for me until, of course, the MS progressed. But I'm now back to that state where I don't think twice about going up and down a fight of stairs. I have started riding a bike again, and I mentioned this because riding a bike requires balance and my balance was severely affected by the MS. So I've got a lot of my balance back. I've also started running again and never thought I would be able to run again.

Di: 28:04

Wow.

Parmjit: 28:05

Yeah, and I even competed in my very first bodybuilding competition. No, yes, yes. One year after HSET, I competed in my very first bodybuilding competition.

Di: 28:17

Wow.

Parmjit: 28:19

Yeah, wow.

Di: 28:21

Yeah, that's amazing. Thank you, I think so.

Parmjit: 28:28

I am so grateful honestly, I'm just so grateful for this treatment because it has truthfully given me a second chance at life, as I can cancel it oh my gosh yeah.

Di: 28:44

You know, I kept wanting to ask and I was going to leave it for the end. I was like, do you work out? Do you work out, like this thing in my head, like do you work out? And you just basically answered that and wow, that's just, that's amazing.

Parmjit: 28:59

Yeah.

Di: 29:00

That's amazing.

Parmjit: 29:01

Thank you so much, and you know it's funny that you should ask that. So even when my MS was bad, I still worked out. But all of a sudden I was going into the gym with a cane instead and I was very self-conscious, and so things that I used to be able to do, like just walking on the treadmill without holding onto the sides, I couldn't do that anymore, right.

Di: 29:25

So I still wanted to do that. How old were you when you couldn't do that anymore? Can I ask?

Parmjit: 29:29

Oh sure, oh gosh, they're about 32. I want to say about 32.

Di: 29:36

Yeah, 32, you were with a cane.

Parmjit: 29:39

Yeah, yeah.

Di: 29:41

Yeah, wow, this is really like an incredible story. It's just an incredible story. And seeing you and learning just now about the bodybuilding competition and the running and the bicycle, I mean it's just it's amazing.

Parmjit: 30:02

It is, it is, yeah, it is.

Di: 30:06

Yeah, wow. So for the patients out there who are listening, or to family members who are listening, what are the main criteria that patients with MS should consider when evaluating HSCT as a treatment option, and are there any risks that you haven't mentioned or limitations that are associated? Because we did talk about it being chemo and the response is what you'd expect the response to be to chemo, but anything further and like are there people who you would say actually I don't think HSCT is for you? If you can just elaborate a little bit on that.

Parmjit: 30:52

No, absolutely so. Hsct, really, some of the criteria for a patient to be considered for HSCT is typically if that patient has primary and secondary progressive MS as well. As you see, I haven't had, you know, and I again I can't. I don't use the word cure because HSCT is not a cure necessarily, but I sometimes even forget the type of MS that I had. So our MS, that is the acronym I was looking for.

Parmjit: 31:27

So, patients who have remitting relapsing MS, I would say I would say every patient that has MS should pursue HSCT and at least apply Now what clinics like Clinic of Ruiz and other places that are doing HSCT so HSCT also is done in India and I forget where else.

Parmjit: 31:52

But some of the criteria that I believe a lot of these doctors look for is they're looking for patients who have evidence of their disability getting worse in the previous 12 months or who show signs of active inflammation, and so the active inflammation is shown by new lesions on a MRI or having had a recent relapse. And so I'll use myself as an example. So I, even though I didn't have any, I did have active lesions, but I also was constantly relapsing, despite being on medication, I was constantly relapsing. And so if a medication is not working for a patient and a patient is still relapsing and still has active lesion in their brain, that patient would be a good candidate for HSCT. But I will also say a patient who maybe does not have active lesions should still pursue HSCT, Because I think in some cases they do still get accepted.

Di: 33:07

And you're saying that because if they don't have active lesions, what does that actually mean? Does that mean that they're they don't feel symptoms from a MS?

Parmjit: 33:17

No, not necessarily. So a patient can have an inactive lesion and still and I and you know and right, so we've spoken about I'm not a right, I'm not a doctor, so I can't speak to it as eloquently maybe as a position or a hematologist or neurologist might be able to but typically, even if a patient has inactive lesion, they can still experience the symptoms of MS.

Parmjit: 33:48

And for kinds within my own diagnosis, that I had inactive lesions but in which but in which I still experienced symptoms of MS like balance issues, like muscle spasms and pain in my back and things of that nature.

Di: 34:07

Okay, so, so yeah, it doesn't whether you have the active lesions or not. It could be a game changer.

Parmjit: 34:17

Right right.

Di: 34:18

Absolutely so, other than your story, which is just absolutely remarkable, are there any patient experiences, because you are connected to so many MS patients? Are there any experiences of that you know, of that have to do with HST being the treatment for MS that you would want to share briefly, that have highlighted the positive outcomes, anything that really stood out, even though I really think your story just stands out so much. But is there is there any other anecdote that you would want to share?

Parmjit: 35:03

No, I would just want to share. So, of course, hst is great for MS. I also want to say and this is going to sound so cliche, this is going to sound so cliche a positive mindset makes all the difference. And I'm a believer in our, our cells, you know, our cells are listening to us and when we we introduce and again, and I'm not a, I'm not a doctor, and so this is just, this is just my opinion and just what I found over the years when we are negative and we are have negative self talk, we are introducing disease into our body because our cells are listening and our nervous system is reacting. And so talk a lot about having a positive mindset. I know a lot of people say, oh, again, that's cliche, and everybody says that. But the mind is a powerful thing. And not to say that a positive mindset is going to cure you of MS, I'm not saying that.

Di: 36:13

Right, right of course Right.

Parmjit: 36:15

A positive mindset coupled with a good diet fruits and vegetables, and and in addition, to some form of exercise, whether it's weight lifting, weight lifting or aerobics or whatever patient can handle. I think all of those things together. I think a perfect nucleus for healing. But I think HSTT is definitely the icing on the cake.

Di: 36:49

Oh, clear, yeah, and I have to. I have to say you know it might sound cliche, but there is also so much research now about meaning and purpose and even positive relationships and how they affect our well being and physical health that it really is important, I think, to highlight that and also look at the whole process as a complex process that has different components that really all have to take place in order for the healing to begin Absolutely. And I think it's really important to highlight it even. You know, even if you say it again and again and it might sound cliche to someone, that's okay. That's okay because it really is that important, I believe.

Parmjit: 37:46

Yeah, and I'm so glad that you mentioned that.

Parmjit: 37:50

I don't know if you've heard of the ACEs study, but the ACEs study and I'm going to and I believe it was done by Kaiser Permanente, but again I could be wrong, I might be misremembering, but the ACEs study took a group of patients and noted which group of patients had alcohol abuse factors in their home, which of these patients had sexual abuse in the home, which of these patients had domestic violence in the home, and it found, in following these patients, a lot of these patients over the long term, as they, as they went into early adulthood, did develop chronic diseases and conditions.

Parmjit: 38:38

You know, and without getting you know too much into it, I had all of those ACEs when I actually took part in, I actually was, was part of, not this particular study, but I did an ACEs test and I evaluated, I was evaluated and all of those conditions or all of those factors were prevalent in my life in my early adulthood and and lo and behold, I did develop. I did develop an autoimmune disease later on in early adulthood. So again, all those stressors environmental stressors and what we think about it absolutely plays a part in the development of disease.

Di: 39:24

Yeah, yeah, you really do have an incredible story and I hope that I get to, I get the privilege to have you back on, because you do have all kinds of angles that we can tackle together. But you really are a warrior. A warrior and a and yeah, like I, you know, I don't even want to say survivor, I just I feel like, because I feel like you're, you're like, you know, yeah, you're, you're a warrior.

Parmjit: 40:04

I appreciate that so very much that it's it's I'm humbled and I'm honored. So thank you for that.

Di: 40:13

As HSCT for MS does evolve I'm assuming that it's continuing to evolve. What do you think, what do you see as the future for the treatment, for this approach, and is there any ongoing research and efforts that you know of? And yeah, I'm curious even though you're not coming from the medical field per se, but you are very, very involved in the MS community and, specifically, you're a huge advocate for this type of treatment. So I did I did want to know a little bit about how you foresee the future.

Parmjit: 40:55

Sure, sure, and I and to be completely honest, I haven't delved too much into that and I'm not privy to all the information related to what work is being done to. You know, continue to explore HSCT as a treatment, as a, as an ongoing treatment for MS, but I do believe that it is eventually, if not already, going to eventually become FDA approved for a treatment for MS. I believe it's going to be much more widely recognized as an effective treatment. I mean those drugs that you know slowed down progression of MS. Those drugs are about 40% effective, about 40% effective, whereas HSCT, the overwhelming data shows that it is over 85% effective in stopping the progression of MS. And so I think more and more doctors, more and more neurologists are going to start recognizing it as an effective treatment. And so when a patient gets diagnosed, rather than be told okay, here are your four or five MS drug options, I think providers hopefully will start saying here are these five drug options that you can choose to take, or you can choose to go down the HSCT path, because this is much more effective and completely stopping the progression of the disease.

Parmjit: 42:30

And I think not just here, for so of course you know I'm based in Las Vegas here in the United States. I think it's going to be more widely recognized, not just here in the United States but in other countries, as it continues to be. You know, as I mentioned, the HSCT is being done in Russia. Currently it's being done in yeah, it's being done, I believe, in two places here in the US. It's being done in Mexico now. I got it done in Pueblo, mexico. It's now also being done in Monterey, mexico, and I think more and more countries and places around the world are going to recognize that this is the best course of treatment for somebody who is diagnosed with multiple sclerosis.

Di: 43:22

Wow. So, on that note, is there anything that you would want to add, anything that you feel I may have missed?

Parmjit: 43:33

No, I don't think so. But there there is something that I want to add and I definitely want to encourage patients. So when I was diagnosed with MS, even though I was going downhill, I still had remitting, relapsing MS. And remitting relapsing MS is I don't want to say, and I hate to put it this way, I don't want to say it's the it's when your disability hasn't progressed that much yet.

Parmjit: 44:01

I do want to tell patients that even if you are doing fine and you might think, okay, well, I don't really have symptoms yet and I have been in remission for this period of time, I haven't really had many relapses, so I don't need HSTT. I want to tell patients get HSTT as soon as possible, because you don't want to wait until you are becoming more and more immobile or having or have more and more symptoms before you pursue HSTT. Because, again, hstt is not meant to reverse symptoms. You know that that, again, is the cherry on top. If symptoms are reversed, great, but the thought is to stop the progression completely. So stop the progression. I encourage and urge patients to stop the progression via HSTT as soon as possible.

Di: 44:55

So if you are early in your diagnosis.

Parmjit: 44:58

Stop the progression before it gets to that point. I do also want to share my EDSS score. So the EDSS is a disability scale and I'm going to give you the exact. Well, it would help if I had okay. The EDSS stands for the expanded disability status scale, and so the higher a patient is on this scale, the more disabled a patient is. So my EDSS when I went to Mexico was a 4.5. That's how disabled I was.

Di: 45:33

My EDSS to this day. This is a 4.5 out of how much?

Parmjit: 45:38

You know, I believe it is out. You know, I wish I could tell you I don't have that pulled up. I would have to look that up. I wish. I'm so sorry. I wish I had that. No, no, no, that's okay, but my EDSS EDSS at the time when I got HSTT was 4.5.

Di: 46:00

My.

Parmjit: 46:00

EDSS now is between a zero and a one. Okay yeah, and I shared that to say. And again, I got lucky in that some, a lot of my symptoms were reversed, but that is not always a guarantee. So again, I urge patients to pursue HSTT as soon as they can and, along with talking to your neurologist, I also encourage a patient to talk to a hematologist, because a hematologist is going to understand HSTT perhaps even better than maybe a neurologist would.

Di: 46:40

Very, very important. So a hematologist and a neurologist is highly recommended to get both of them on board. And of course you know, seek the doctor that fits you best and you know. Second opinion, third opinion I'm just going to expand a little bit, if you don't mind, that EDSS is a score out of 10. And specifically 4.5, just so that it's very clear to people who are new to this Significant disability, but up most of the day able to work and may otherwise have some limitation of full activity, require assistance and able to walk without aid for about 300 meters. Does that sound right?

Parmjit: 47:40

It does, it does.

Di: 47:41

Okay, and then you know, I'm looking at the scores and the higher we go towards 10, it gets pretty scary. Yeah, yeah, very, very important information, very important information, so I really can't thank you enough. Thank you for joining me.

Parmjit: 48:06

Thank you for having me. Thank you for giving me this platform to share my story and to get the word out about HSTT. I think the more people that know about it, the more people we can save, so I'm beyond grateful for this opportunity.

Di: 48:23

I'm. I really feel grateful as well, and it's is there. You speak internationally regularly and is there a way for people to reach out to you, like Instagram or LinkedIn, or something that you regularly can connect with people on?

Parmjit: 48:48

Sure, sure, absolutely. I would say I do have an Instagram, but my Instagram doesn't. It does talk about HSTT, but my Instagram is very silly. I have, you know, silly videos on there so folks can connect with me on Instagram. My handle on Instagram is stem cells. Underscore the letter N as a Nancy underscore dumbbells my stem cells and dumbbells my LinkedIn profile. It's my full name or, but I would say either on my Instagram and or my LinkedIn is the best way to connect with me.

Di: 49:27

Amazing, amazing, and thank you for being so inspiring and for being so knowledgeable about everything that you've been through so that you could actually share it with others. I really thank. You are just a star. I really think you're a star.

Parmjit: 49:46

Oh, thank you. Thank you so much again. I'm I'm humbled and, it is true, it's truly my honor If I can help even just one person pursue HSTT and get their life back the way I did it is. It is a honor.

Di: 50:03

Beautiful. Okay, thank you for your mission. You and I are going to touch I believe we're going to tackle other angles together.