This is the full transcript of Dr Sreekala's talk which is posted in Youtube https://youtu.be/6BPykI9GLqg?si=J2vgmHkYUwENiVAt
[Geri speaking] All right Dr Sreekala. We are about to start.
[Dr Sreekala speaking] okay
[Geri speaking] all right yeah thank you so much. As I had mentioned this talk is going to be recorded. That's why we have spotlighted our speaker and our two interpreters. So good evening and good morning everyone. We have some folks here in India attending as well as folks in the US also attending. My name is Geri Rosario G E R I and my sign name is I point to my eyeglasses and I do the letter G sign ISL sign for G which is like one fist uh above of the other. All right so welcome everybody to this USH India meeting and USH India is the India chapter of the Usher syndrome Coalition. okay and one of the things we focus on with the Coalition is to connect researchers and individuals researchers with individuals and also other resources that we have in India as well as abroad pertaining to Usher syndrome. So as part of this goal, we wanted to invite somebody from from Shreedhareeyam who Sreedhareeyam is providing treatment to folks with Usher syndrome especially retinitis pigmentosa. Right now we have four members of the Usher syndrome Coalition who are patients of Sreedhareeyam. My son is one of those members. Another member is the son of Lata who whose son has been going to Sreedhareeyam for I think at least 15 years. My son has been going to Sreedhareeyam for two years. All right. Before I continue, can I please request Ravender, I thought you are the the main (ISL) signer. If you can please start signing, okay so it will be recorded. okay great.
So our speaker for today is Dr Sreekala. And I received her profile and it's like very long. She's such an accomplished doctor. She has about 24 years of experience at least 24 years of experience in Sreedhareeyam in terms of clinical experience. Now Dr Sreekala wears a lot of hats in Sreedhareeyam and what caught my attention is her involvement in the research arm of Sreedhareeyam. She's directly involved in a lot of research activities including observational studies as well as Interventional studies. And by the way Interventional studies are what we sometimes call clinical studies or clinical trials okay involved in these studies to analyze the effect of aortic therapies and medicines she's also active in product development as well as the publication of research results in peer reviewed journals. Now I specifically mention peer reviewed journals because there's a lot of interest in seeing peer reviewed research around Retinitis Pigmentosa as well as Usher syndrome, peer-reviewed research, published research, not just of one patient but many patients, with a control group and so on. There's a lot of interest there especially for those who do not believe in ayurvedic treatment. So anyway that is my brief introduction for Dr Sreekala. This is going to be a Q&A type of a talk so hopefully this will be more interactive for our audience. Feel free to ask questions. Okay? So I would my first question for Dr Sreekala is that if you could please elaborate a little bit about your background. You are I believe third or fourth generation in the Namboothiri family in this line of work. if you could please elaborate a little bit about your background as well as the history of Sreedhareeyam in terms of treating eye conditions. Thank you.
[Dr Sreekala speaking] Thank you Geri. Good morning and good evening to all. I'm very happy to be here in front of you and very happy to see all of you attending this. Can you hear me?
[Geri speaking] Excuse me doctor. I can hear some background noise. Is anybody else hearing that?
[Aruna speaking] Yeah I'm hearing it too Geri.
[Geri speaking] All right. Just a minute okay let me make sure that everybody is muted. If nobody uh if everybody else is muted, that would be great.
[Dr Sreekala speaking] Still you are hearing?
[Geri speaking] okay sorry if you could please continue. I'll try to figure out that background sound.
[Dr Sreekala speaking] Sure okay thank you. So regarding your first question is regarding Sreedhareeyam no. Sreedhareeyam is a renowned ayurvedic institution. Usually it has a history of around 400 years. It was founded in 1820 but this is from our ancestors end. But for my knowledge that institution that clinical practice and that product medicinal development, everything started in 1931 by Vaidya Thrivikraman Namboothiri, my grandfather grandfather's great grandfather. He has started that and along with his brother Vaidya Parameswaran Namboothiri. And he was more interested in that production, production manufacturing of medicines, ayurvedic medicines, herbal formulations, separate formulations for each diseases. He they have started as a small clinic in that. Usually they used to visit the patients at their home and they will attend the patient's condition. Conditions will be analyzed and then medicines will be prescribed. Like that it was following. He was a great scholar of Sanskrit even Sanskrit because as I don't know whether you know that the most of the ayurvedic literature is in Sanskrit. So that Sanskrit learning it's it's an important thing. So he was a great Sanskrit scholar. He used to teach the Sanskrit also. So they they were practicing that and that was going on well, but from that other things that Sreedhareeyam as an institution started in 1999 because that is my father. My father Dr NBP. Late Dr NBP Namboothiri. He and his brother his brother Mr Narayanan Namboothiri that chairman, the present chairman of Sreedhareeyam. They have started this institution in a small small setup. Small setup means 10 beded hospital like it just started because that time from the beginning itself we we were there in that institutions because my father was an in the government services so he was with the other research activities there also. So we were looking after this institution and it's after his retirement he joined fully to this institution. So slowly that from the beginning itself we were seeing that patients with this retinitis, Usher syndrome and retinitis pigmentosa are like patients we were seeing and because of this progression nature of the diseases, we very interested because at least they should have maintained that vision in their lifetime. If it's not curable also, they should maintain that vision till their death, or at least they should have some confidence in other activities also. So we were so like that we were preparing some medicinal and treatment modalities also prepared. So that it's because of that history Sreedhareeyam has remained committed to the that preserving traditional ayurvedic knowledge because that we are we we have that other means in investigations from that modern side also and that but the treatment aspect everything with that ayurvedic knowledge, ayurvedic tradition only ayurvedic only herbal formulations and that formulations according to that the ancient textbooks and some changes in that only we were given because it's that preparations and combinations everything depend on the ancient ayurvedic text. So today that institution is having a 400 bed hospital. So we we have different branches in around 23 branches in in Kerala and outside outside Kerala. Means all over India. So that their inpatient facilities are also there and outpatient facilities are also there. And other than this eye conditions , we are offering the other other departments also. General conditions also. General treatments are also there. And Pediatric means then so means orthopedic departments are there. And Women and Health Women Health that is there. ?? and Rejuvenation therapy is like that is there. Age related degenerative conditions, old age therapies like that it's that is other departments are also functioning other than this eye conditions. So we have some now experienced practitioners, great experienced practitioners other than that family. Family members are also around nine doctors or nine to 10 doctors are there. And other than that any other experienced practitioners are also working here in research department and in the factory and other this clinical setup also. We have a our hospital is an accredited NABH accredited hospital and we have a manufacturing unit also, NABL accredited manufacturing unit. So all the medicines are prepared there only and the good lab facilities are also there just to analyze that the quality of that medicine. okay.
[Geri speaking] All right. Thank you doctor. This is Geri. We have a few people in the audience who may not be familiar about ayurvedic treatment. So in in layman's terms, can you tell us about you know what is included in ayurvedic treatment. Is it simply herbal medicine, oil massage, and so on.
[Dr Sreekala speaking] iI's not like herbal medicine and oil massage and all. Because ayurveda, the main aim of ayurveda is ____. That is the just I'm I'm just quoting a slogan, that's all. Just maintaining the health of a healthy person and treating the diseases. Okay. That so main aim is to maintain the health of a healthy person. So like that. For that it is it has a different branches of ayurveda also. Eight eight branches are there. Ashta, eight branches of ayurveda in treating different conditions or different areas of that our study of our body. So in that, this eye conditions it's it's it's coming under Urdhwanga Chikitsa. It means diseases above the neck, above the neck Eyes, ears, nose and head. Everything included under that. So that specialization is there, and eight branches are there. So the after completing that B-AM in the graduation, the specialization in each section is there in that other doctors will specialize in the other depart this departments also. So then they will start it. So we can't say that it is this is just just a oil massage and herbal medicines because I don't know whether you have heard about Panchakarma Therapies because Indians will be knowing that. Panchakarma Therapies means five five types of purificatory therapies. It's not like a this massage and ___ or anything. That is all. It's a preliminary things of that this Purva Karma. This because before that starting that the main therapy is that Panchakarma. So before that starting the Panchakarma, some some preparatory things are there this massage and all. Because because all the things are it's not like for massageswill help for that. So that main purificatory therapies that aims to eliminate that doshas (ie, that which can cause problems) because ayurveda depends on that. Ayurveda principle depends on that three doshas - Vata, Pitta, and Kapha. Three doshas are there. So that three doshas we are treating that Shareera (ie, physical body). The Shareera that all the body is considered as a pancha bhuta, that five elements like Earth, water, this fire, air, everything that pancha mahabhutas, space, everything. So so all the that three doshas are derived from this pancha mahabuthas only. This this five elements also. So the concept is that just because all the doshas because the whatever the disease is also, the that that balance of these doshas are the health. And any imbalance in this doshas will considered as disease. In all the parts of the body, every everywhere this balance and imbalance will be there. So that depends on the lifestyle or the genetic problem, whether it is a genetic or any acquired things or that. Because the disease we classify the diseases into seven types. That is genetic diseases, and then congenital, humoral, then some traumatic ecological, and supernatural. Or natural other diseases also. We consider these diseases. So that the genetic means Usher syndrome and all, it's it's a genetic disease. It's it's a genetic entity. It's there, no? So we consider this that this genetic this is that genetic part is also described in that ancient text. That time itself it is all described there. Because of that that, along with that what is the union of the union of of this semen and that ovum and semen, that that all that health of that semen and ovum also, that all depends on that the genetic factors also. So the in because that we have inherit that inherited characteristic between the parents and offsprings are facilitated by this this units are this important aspect. This are there are innumerate by Nature due to innumerable organs and structures. Because of that this unhealthy ovum and sperm, this diseases can occur. So that genetics is described. Accordingly the main thing that the treatment aims to maintain that quality quality of that health health quality of health. And also that because some some therapies like Shodhana (?), some purificatory therapies will be there. Then brumhanam (?), improving that general conditions also it's there. then the rasayana rejuvenative therapies are also there. So in genetic disease disorders like this Usher syndrome and all. This Rasayana therapy Rasayana therapies will have that great role because that will help the to maintain that conditions or to stabilize the condition, because it's not we can't say that it's curable, but that can help to improve that quality of or improve the quality of means vision -wise it improve the quality. And some some different different types of rasayana, thisrejuvenations are explored there. It's a preventive and therapeutic mode of management. So that restores and rejuvinates the seven functional the the tissues, rejuvinates the tissues that the tissues. So the treatments includes some preparatory things. And then purificatory things. And then that rasayana therapies. Rasayana means that rejuvenatory things. That is all needed. Just with some medicines, internal medicines and just it will not have that effect. okay.
[Geri speaking] All right. Thank you Doctor. I I hope we haven't lost the the others in terms of some of the terms that you had mentioned. But I'm glad that you are also explaining some of these terms because we have some non-indian attendees as well.
[Dr Sreekala speaking] yeah yeah
[Geri speaking] yes when I was when my son and I were at Sreedhareeyam in in Kerala, one of the things that Dr Narayan told us was why we go through all of these treatments and why in between visits to Kerala, that continued use of the medicines is also important. He he mentioned that it increases the blood flow. A lot of these medicines increase the blood flow around around the eyes and around the ears. And to keep the cells healthy. You see, part of my understanding is part of retinitis pigmentosa is a lot some of the cells in the eyes are slowly deteriorating. That's why the peripheral vision is slowly going to deteriorate as well. So when he explained to me the the need to increase that blood flow around the eyes, so the the eye cells continue to receive nutrients. For me that kind of logic clicked in me, because it's in a similar way as we are taking vitamins, we are taking healthy vegetables, we're trying to keep the cells of our body healthy. And part of the things that they had prescribed for my son is certain type of diet, certain type of foods that we have to avoid. And also certain types of lifestyle things, like for example protecting the eyes from the sun and so on. So for me, the logic sort of made sense because we have tried other uh medicine as well, you know, and I didn't understand okay why would this work and so on.
[Dr Sreekala speaking] no that thing is that that all the things because that that whatever that you told know that some nutrients like vitamin supplements and all. So like that this rasayana will work because rasayana means that rejuvenative medicine. It's it's like a a combination of medicine or some therapies which have some nutrient effect. Okay. But for accepting that nutrients, for absorbing that nutrients, we have to prepare that our body. We have to prepare our body because just because if the body is not that prepared for that for accepting that. Before that for that only this Preparatory therapies like panchakarma and other other things. Some some body treatments and some other therapies are there. Then then the last thing is that rasayana to maintain, to maintain. Or in in Usher syndrome, other genetic disorders, it's not curable no so incurable. What this thing what is the main aim is to maintain that condition. So in other diseases, this rasayana, in other diseases also this rasayana therapies this that is there. That rejuvenation the nutrients so so that is like nutrients, giving nutrients. Okay so that is to eliminate or just to uh fully curing that other condition. Other some some diseases this rasayana this type of nutrients will help. Okay for before this applying this nutrients this this therapy is also this some reju means purificatory therapy is also there. So that includes that body purification and some some eye treatments. So you'll be seeing that no. Some eye therapies also will be there. okay just to just to improve the circulation and and along with that this diet also important diet because that is because we are all in ayurvedic concept, that main thing is that that our stomach, means our digestion, whatever we have, the digestion should be proper. Then only that the health will be maintaining. So that should be maintained. And that proper medicines and proper time. So then then the exercises on. Then stress relief things like so like that the yoga also will help. Okay to some extent yoga will help because it's direct impact is not there also. It it can improve that circulations, improve that mental power, improve that confidence of that level. Okay.
[Geri speaking] Okay this is Geri. Thank you Doctor. I also wanted to share with the others sort of the experience of of my son. So when we first so this year is the second year that my son has gone to Kerala to Sreedhareeyam. And for each visit, we were advised to be there for 14 days. Okay and the initial things that were done were you know do all of this diagnostic eye tests. The OCT test, the I think fundus photography, the visual field test. And all of these were designed to have that benchmark, have that benchmark. And then the second time we were there, these tests were repeated. So there is data maintained. just a minute, okay so there is data maintained to see what is the progression of of the vision. Okay let me actually just just a minute, let me spotlight Sonal now. and remove the spotlight. Okay so now we have Diane for ASL and Sonal for ISL. All right. So what what was I saying. So anyway based on our experience there, for the treatment of retinitis pigmentosa, so there's a lot of different varieties of treatments that my son had to go through. And I'm going to explain things in more layman's terms. I'm not going to use the the actual name of the treatment because frankly I had forgotten. So one treatment just just to describe to to the others. One treatment was there's like a a paste that was placed, herbal paste, that was placed on top of the head for a while, for around 30 minutes. Another treatment was some sort of oil herbal oil massage on on the eyes. Another treatment was herbal oil massage around the ears because again this is for Usher syndrome. Both eyes and ears are part of the the treatment. And then the other there's a variety of of of treatments. The other treatment was there's like a an like I don't know if it was ghee medicine or I can't remember the name of the oil, it was poured around the eyes for for around 30 minutes covered. The eyes were were covered for a while. And there was like a a dough placed around. And then after that someanti-inflammatory petals were placed on the eye for a while. And I I I know I'm not doing justice to the explanation of of all of these treatments, but I have to say my son loved the treatments. My son is 12 years old. He was not at all disturbed by all of these treatments. He actually loved it. And he was very very much relaxed by it. And the other thing was that also the atmosphere in Sreedhareeyam, if you're actually there in the hospital, as opposed to just visiting you know a a day patient, you get to meet a lot of patients with so many different types of eye conditions. There is diabetes that cause the blindness. There is Retina Detachment. People who go there for cataracts. There is actually a a Hindu priest who has been going there after he had his eye operation, I think it was for cataract or or something else. He kept on going every year to Sreedhareeyam because he knew that with eye operation, the cells and muscles around his eyes have weakened and he kept on going there every year to ensure that whatever is the health of his eyes will continue, will be maintained to be healthy. You also get to meet other people who have had success stories. There was one guy now I can't remember anymore what was the condition of his eyes. He suddenly became blind and through three visits to Sreedhareeyam, he was able to regain his eyesight. I I was not I did not talk to him directly, so I didn't know what was his condition. I had met a lot of people there with retinitis pigmentosa. A few patients with Usher syndrome. There was even one patient with Usher syndrome who was specifically recommended to go there by his regular doctor, regular eye doctor specifically go there. So the atmosphere there to hear that that ayurvedic treatment has actually helped some of these different eye conditions and people going back and their eyesight slowly improving or being maintained was for me, as a parent of a young boy, was very encouraging. I also like the fact that there was no surgery involved and no genetic thing. You know right now, unless there's something proven with genetic therapy, I'm a little bit hesitant for that. So I wanted to to share that experience. Also now I I want to ask the audience right now, if you have a questions for Dr Sreekala, I would open the the floor for other others to ask. okay I don't see.... Did somebody .... all right . So nobody has a question right now. So I would like to continue. Doctor, one of the things that, as I mentioned at the start, people would like to see is if there are any published research on the effectiveness of the ayurvedic treatment for maintaining the health of the eyes with retinitis Pigmentosa. And I had seen in the research website of Sreedhareeyam that there is one paper I think it was published in 2023, a case study for one patient with retinite retinitis pigmentosa and the you know the test results for the first visit and the test results for for the second visit. And it was a a published research. I also noticed that there was another paper another research done although I could not see the paper. It's entitled "Retinitis Pigmentosa Ayurvedic Regimen: A comprehensive Protocol Tested on 50 Participants." I didn't see any paper. I was wondering how we can have access to that study especially since it is for 50 participants. We are very interested to know how these 50 participants reacted or to the to the the treatment.
[Dr Sreekala speaking] Okay so uh no that uh we have uh that that in retinitis Pigmentosa that published papers are not that much. Published papers are not that much. But we are on that research because we are collecting that datas of previous years now, previous years that we are that collecting that and we are making it and then just to because if one case if you publish like that also, it will not be that much ___. We have to collect many many cases now. So we are collecting. Our research department is doing that work also. And we are very very good very happy news are also there because in because 15 to 20 years patients are also there maintaining. They are visiting and they are means still they are communicating with us. And they are maintaining. They are doing their work. They are active in their work. That is because very we were very hopeful in that. Because after hearing that after because that they are visiting, means visiting means not like every year the treatments like that not like that but occasionally, once in four years or five years also there. But in some cases that deterioration is also there. Deterioration is there but that is a slow slow deterioration is also there. Okay we can't say that every case it's like that. Some slow deteriation. So the datas we are collecting. So we will be publishing because for publications anyway we need that much this one because otherwise it will not be that that it will not be good. So there single cases are many but in we have that this year I give you that. This year the total number of RP patients from 1 January to this 30th June this this 2024 that is 172 patients were there. And that in that new admissions were 24. 24 new admissions. Followup patients but other 148 for patients were followup patients. So total Usher syndrome patients admitted in January to June, it's 16. So in that that many patients are like IP (inpatient?) that three to four times IPs or some one time IP like that also. It's there and year means 15 years, 12 years, 13 years, that that that much year they are following because they following up. That age also it like above 50 patients are also above the age is like above 50. They're also visiting. So that is is a good thing. This positive thing and at least they are maintaining. That's what we are experiencing it's said. We can't say that the other because if you take that fundus photo and then field test and everything any drastic improvement in that, we are not expecting that. But only that the main thing is that confidence level is more because that adaptation from bright to dark, when they enter into a dark room no, the time of time taken for that adaptation is improving. And at least they are confident in moving, because we have college going students and all. They are all because we are giving like that that advice only, maximum to be self-dependent. Don't depend on others. Self- dependent. So they should have some confidence no. And and to maintain that healthy lifestyle. That is a very important thing because this can because if it's associated already it's a genetic disease. If it's associated with other lifestyle disorders then it's it will be difficult na. The other other things and the complications and all. So healthy lifestyle should be maintained. And and follow up some some treatments also it's it's good. We can't say that every year it should be done because it's not possible for everyone to do it continuously for that long time no. So but some hopeful results are also there in that in our collection datas. Okay.
[Geri speaking] Thank you thank you Doctor. I'm going to read some questions that are posted in the chat. One question from Dr Namita Jacob. From a deafblind adult who is not able to attend the meeting. What is the science behind the approach to the treatment of RP. Does it focus on building the health of the retina? How is it different from treatment of other eye conditions? So this is a question in the chat.
[Dr Sreekala speaking] yeah yeah that that main thing I told as I told you that in ayurvedic the treatment approach is slightly different than allopathic because we are not just treating that eye conditions only, because this is it's a genetic conditions. Anyway we have to treat that body itself that that Sharir, that body full we have to consider. What is the nature of that body. How is other conditions. Everything we have to consider. So like that we'll plan that some some therapy. Some rejuvenative, purificatory or regeneratory theraphies also, along with some eye treatments also will be there, that can improve that overal circulations of that retinal circulations also can improve. We can't say that that pigments everything will be is only that. Structural changes will happen in that. We don't expect that also. Only that functional things will improve that. That that way ...
[Dr Namita speaking] If I can just clarify. Can I just clarify the question. This is Namita. The I think what he was asking is in ayurveda itself is the treatment for RP different from the treatment for other retinal conditions? Is there ...
[Dr Sreekala speaking] Yes it's it's it's different only because we are I told you because because that it it's not like same as some inflammatory condition. Okay.
[Dr Namita speaking] Right.
[Dr Sreekala speaking] It's a degenerative condition and inflammatory. This is a different things. So that entire medicines and therapies, everything, will change. Okay.
[Dr Namita speaking] Yeah that makes sense. Thank you.
[Dr Sreekala speaking] okay.
[Geri speaking] Thank you. On to the next question. We have Lata whose son has gone to Sreedhareeyam for at least 15 years. Aruna would like to hear her experience, Lata's experience, with Sreedhareeyam. Lata, will you be able to talk? I think you are muted.
[Lata speaking] Hello can you hear me now?
[Geri speaking] Yes.
[Lata speaking] okay actually we it was not 15 years. We went from from 2002. So it's almost 20 years. More than 20 years. It's actually the thing is that his deterioration has been was controlled to a great extent, that he could lead an almost normal life, till some four years back. About four years back that his condition was little more bad. And Sreekala was the doctor. And Arun was very happy with that and he keep asking me when we are going back for one more treatment. So his deterioration was in 2002. When we went there, he had very little vision. But over the course of ___ years, he has been able to maintain an almost normal life. And he was even running his own business for photo. That was entirely due to Sreedhareeyam treatment. Absolutely no doubt about that because all the allopathic doctors were saying that saying that there was no, he would be completely blind and you had to teach him braille. But see from Sreedhareeyam's treatment, he was able to maintain a normal life till four years back. That's sure.
[Aruna speaking] I have another question Geri. Is that okay?
[Geri speaking] okay yes please go.
[Aruna speaking] Dr Sreekala, what type of like what documents or any past histories would you need if we were to come and visit. We would be coming from the US. So what kind of paperwork would you need for us to bring if we were to bring our daughter?
[Dr Sreekala speaking] You just you can send that that details of your the condition na.
[Aruna speaking] okay she has a very special one. She it's not just Usher syndrome. It's HARS 3B.
[Dr Sreekala speaking] Okay.
[Aruna speaking] So I'm wondering if you would need like genetic testing, all of that done like we have all of that paperwork.
[Dr Sreekala speaking] Anything because previous any reports are there, then you can send it. Then we'll see okay. And that present condition and what how is how is she now.
[Aruna speaking] Okay and then like your the initial visit, how long does that normally take.
[Dr Sreekala speaking] The treatment you are asking?
[Arun speaking] Yeah the initial treatment.
[Dr Sreekala speaking] Treatments and depends on the condition. It's three to two to three weeks. Sometimes four weeks that inpatient treatments. But depends on that conditions, we'll plan. Usually three weeks initially.
[Aruna speaking] Okay I'm just trying to get an idea so that when we come, we have enough time to you know prepare for it.
[Dr Sreekala speaking] Yes yes that other detail, if you if you you can send that mail also no problem that you can send the report. After seeing that, we can plan something and then we'll inform you how long and how it works like that.
[Aruna speaking] One more question. II's not related to Usher syndrome at all. Do you also have a treatment for cancer?
[Dr Sreekala speaking] We are giving medicine but just we are supporting with with the other system of medicine support for supporting that we are doing that treatments. But along with the allopathic therapies.
[Aruna speaking] Okay thank you.
[Geri speaking] So this is Geri. I remember for our initial visit, before we actually scheduled our first visit, we had an online consultation with a doctor at Sreedhareeyam, where we had sent to them whatever reports we currently have. For example the most current audiometry test, the most current visual field test and so on so. And then we had that initial consultation, online consultation. And from there, they had suggested to us how many weeks or or days we we need to be there. So hopefully that will help. I will share with the group the contact information to make that initial online consultation. Okay okay. I'll move on all right I'll move on to the next question.
This is from Adrienne. I hope I'm saying the name properly. It sounds like the treatment for RP and Ushers involves mostly direct contact with the eye and ear areas through oil and a abhyanga-type massage. Is panchakarma also part of the two-week treatment or is it a separate recommendation for better circulation, absorption of nutrients and whole body health? I ask my question because I know of a panchakarma clinic nearby in the U.S. but I'm pretty sure they don't include eye Treatment. But if panchakarma can have at least a supportive role in treatment, that would be a helpful place for me to start before making the decision to come across all the way to India.
[Dr Sreekala speaking] Because the treatments depends on that that panchakarma, which panchakarma it is, that depends on that condition of that patient. okay. After assessing that only that we have to whether that panchakarma is needed. In some patients that panchakarma, all that therapies will not be needed. But some therapies, because mostly that in RP and Ushers, without any other complications, that normal panchakarma therapies also will be included along with this. okay you'll plan according to that condition. Some of them. Like yeah.
[Geri speaking] All right. This is Geri. Adrienne, I hope that answered your question otherwise if you can unmute yourself and you can ask further details.
[Adrienne speaking] So that is helpful it sounds like so I have a Usher type 2A and it sounds like from the answer I just heard, it depends on the severity, like what symptoms I have, how far it progressed, and it's kind of on an individual basis. Is that correct?
[Dr Sreekala speaking] So panchakarma in in the treatment-wise and also improving that for general means to maintain the health also, this is recommended. Okay.
[Geri speaking] okay just a minute. Okay. I'm trying to switch the ISL interpreters. okay I think I've got it right. Okay so I'll move on to the next question. This question is from Latha. My son is five years old and has Usher type 2 C. At what age can we start treatment at Sreedhareeyam so that he can cooperate with a treatment? So five years old.
[Dr Sreekala speaking] Even 5 years we are treating because that all the therapies will not be there. Accordingly we can start some medicines also no, and some some therapies, some minor therapies and some there will not be some panchakarma and all, but eye treatments will be there. And some internal medications also can help in this age also.
[Latha speaking] Okay so if we need to stay in Sreedhareeyam, will _____.
[Dr Sreekala speaking] for that after sometimes after after seeing the reports and all we'll see that, how severe now, how is that condition now. That inpatient also we are doing in five year old if the the child is cooperating. [Latha speaking] okay thank you.
[Geri speaking] So so this is Geri. Just to inform everyone, the for for inpatients in Sreedhareeyam, they have a wide variety of accommodations. And for me this actually suits depending on how much people can afford the treatment. They have wards where people actually share a a big room and just have a a bed in there for themselves. And then the the treatment cost would also be lower. So and then there are wards, and then the next level I believe is a standard room with no AC. It has two beds so it has room for the patient as well as a a caregiver. And then they have standard room with AC. Again two beds but with AC. And then the next level is a suite room that has a a separate sort of living room and a bedroom room that one has AC. That one also has a small balcony. Okay and then there is there are Villas also. And they have a separate what they call I think "Ayurvedic Village" which has more facilities and which usually a lot of the foreigners stay there. They have better facilities in there. Of course the treatment cost will also be higher. So there is a wide range of accommodation to suit the person's financial capacity. I know of people I've met, people who actually traveled from Mumbai to Kerala by train. And then from the train station, they took a bus to Sreedhareeyam. And they stayed in a ward. So the cost of that is is much much lower versus if you go there you go there by a airplane and then from the airport there is a 2hour taxi ride going to Sreedhareeyam. Okay and then you can stay in whatever type of accommodation you can afford. So they have inside the facility, they have their own food court. By the way it's all vegetarian food. I know some people who have gone there were a little complaining a little bit because they they wanted nonveg. Okay so they have that. They have laundry facility. And then the other thing you have to remember when you actually go there, especially for the patients, you have to protect your eyes. You cannot be moving around in the sunlight. So most of the time, you will be asked to stay in your room, preferably no devices because that will tire your eyes. Okay nothing intensive eye work. So initially people will have that sort of withdrawal with this other you know a different kind of, what what do you call it, situation where you have to stay inside. You cannot use your your mobile as much because that will tire your eyes and so on. But then think about it, think about it as unplugging, in that if you have a family member with you, it's time for you to bond, and think of other things you can do. After 5:00 p.m. people go out when the sun is down, you see a lot of the patients outside, mingling with each other, going for short walks around the complex. It's very very relaxing. And I have to tell you my kids love that. They love the interaction with with other patients, hearing the other experiences of the other patients, going to the temple over there, and having that serenity. And also just walking with me and it's a bonding time with me. So I wanted to mention these things because some people might expect okay I can bring my laptop, I can do work while I'm over there. Please try not to do that. And also they told me no chocolate, no sweets and so on. So there is going to be adjustments. Okay but that is based on our experience. The other thing I wanted to mention is that I have seen a lot of little kids in there being treated for a variety of conditions. So I've seen little kids less than five years old. Okay. Now I wanted to ask if there are other other questions? So so I I will continue with with my questions. Going back to the research that's going on in in Sreedhareeyam. I because I myself, I am a statistician. So I like to take a look at data and I track the progress of my son. I track the audiometry information and you know just also the the numbers of his eyes. I'm still trying to understand what's the different numbers involved in the different tests so that I can I can analyze it. But the fact that every time we went to Sreedhareeyam, they did diagnostic tests. I think there were at least four diagnostic tests. It it it tells me that data is being collected and data and that sort of tracking of of the health of the eyes and I will will be there. So I am very confident that Sreedhareeyam is going to come up with with this comparative study across more than you know more than just one patient but right now they're trying to do 50 patients. So if there's anything that the Usher syndrome Coalition can do to help with this research, please let us know because we're really very much interested in seeing what is the effectiveness of ayurvedic treatment. The other thing I okay the other thing I wanted to oh go ahead.
[Dr Sreekala speaking] no no sure we we are also very happy to to be with you know for that this is we are trying for that. Thank you for your that.
[Geri speaking] All right the other thing I also noticed that there are other conditions that can also lead to the deterioration of vision. And some of these conditions such as cataract, myopia, dry eyes, retinal detachment. I have heard other patients with Usher syndrome report this, especially the cataract. I've met patients in Sreedhareeyam who have had these conditions, not RP, but blindness due to diabetes. And they are being being treated there. So I actually wonder if there is also studies being done for these other conditions like for for cataract or retinal detachment. If there are also studies being done right now to see if the ayurvedic treatment is is helping with these conditions.
[Dr Sreekala speaking] yes yes yes we are doing that in in diabetic retinopathy and all. We are doing in studies and in that that there is Improvement in that condition condition retinal conditions. And that usually that patients used to because in retinal edema and all, they used to have injections, intravitreal injections and all. But after that because with with ayurvedic treatments and some therapies, sometimes internal medicine and some external therapies also, that can help to reduce that swelling edema swelling. And they can reduce the number of injections or at least to stop the injections. They are helping. But the thing is that they should have some healthy life because their healthy lifestyle that should maintain the diabetes and all. So like that some diabetes treatment, along for that, the diabetes treatment also will be providing that for but they have to maintain that condition. If they maintain their healthy lifestyle that this can help that retinal health and vision loss will be arrested. That way that we are doing that and getting good results also. In Cataract on and all, early stages early cataract, we are treating. We are giving medicines to means so that can help to prolong that this surgery and all. In mature conditions, we also advise surgery for them if no other complication is there. If any other nerve issues are not there then we advise surgery only. We are sending them for surgery only. And and but in degenerative conditions like RP or Ushers and all, that surgery anyway maximum will prolong that maximum we'll prolong if if they have cataract that much affecting their vision then only we'll advise them to for surgery. Other conditions that and detachment also in early detachment it's if it's not not in a surgical condition then we'll treat, otherwise if it's a surgical case then we send them for surgery only. Myopia and also that good results for reducing that power. And also then some are having without glasses means for avoiding that glasses also will help for that. The treatments will help.
[Geri speaking] Thank you Doctor. Any other questions? Okay so no new questions in the chat so I will continue with my question. So some of our members here they require interpreters because they are deaf with very low vision and some members are completely blind. So the question is will the interpreters be allowed in the treatment room so that they can help the patient you you know understand whatever instructions are given by whoever is giving the the treatment. Or maybe there's another way of of of doing it. I I don't know.
[Dr Sreekala speaking] Usually because most of them will be if they are deaf and blind then somebody will be there with them no. Some usually they come with that some bystander. And and if they are from outside then we advise them to be with some some bystander because otherwise sometimes because that the staff the treatment staff everything because all of them can communicate with everyone in that way so like that but if it's if it's necessary we'll do like that also. We'll provide like that. We will think of that also.
[Geri speaking] You mean you you'll think about the ...
[Dr Sreekala speaking] yeah we will think about that because usually the most of them will be Deaf and blind then there will be somebody will be there. But otherwise also because some some cases if it's very low vision they are staying in that ward so others also will help with them. Others also usually help with them because and staff also will help for that for the treatments. They they will help no problem. Only for their own work no their own other normal work only they need some help. But other usually they will they can stay if some vision is there, but if it's completely blind anyway it's somebody should be there. But we'll think about that if if it's needed.
[Geri speaking] all right thank you Doctor. I have a question about cochlear implants. I do not have experience with cochlear implants but if there are oil treatments around the ear, I don't know how that can be done with a cochlear implant, or is it okay? I those who have cochlear implants in the audience ...
[Dr Sreekala speaking] But that that because if cochlear implant it fits there then therapies will will change accordingly without obstructing that. Okay.
[Geri speaking] all right all right okay I'm glad to hear that. Now any other questions from the audience? If none, any parting comments from Dr Sreekala?
[Dr Sreekala speaking] No. Only thing that because it's this is not anybody's fault or like because born with a problem, born with the hereditary complaints. So whatever that we have to accept that condition and others should help for that acceptance also. And surroundings. Because you are all doing a very good thing because this coalition also because many I think I have gone through that some activities the activities go with the Ushers syndrome but whatever possible things because it's a if it's not curable also because if you can maintain that condition and if other system if other systems are also helping for that you should accept that and you should take the benefit from that. And because we have to fight with that and just just to improve our life no.
[Geri speaking] That that that is true doctor. For for my son, I want to be able to maintain the health of his eyes and ears while I wait for the results of other research, for example, gene therapy and and others. So if his eyesight can be maintained, of course with the guidance of us parents, because simply doing the treatment without a change in lifestyle or or diet is not going to help. There has to be something from from us, from the patient himself to say I want to maintain my eyesight. I should not be whatever playing in the computer for so long or being out in the sun so much and so on. The other thing is that I believe we also have to be aware of other conditions that can further deteriorate our vision such as diabetes. We might think that the deterioration, a sudden drop in vision, might be because of Usher syndrome or or retinitis pigmentosa but it could also be due to something else. That that is also possible. So we just have to be very observant as parents be very observant as individuals and I guess just try our best to to maintain a (healthy) lifestyle. And I know not everybody is going to believe in Ayurveda, but for those who do believe in it and have seen how it can work, hopefully this webinar has been helpful for you. I am going to post in the group the contact information for Sreedhareeyam. I will also post this video after I edit the captions. I'll post it in YouTube along with some contact information. So beyond that I would like to thank our guest Dr Sreekala. Thank you so much. Hopefully I can meet you the next year I'll take my son over there. And believe me I would like to help with any kind of research in in any capacity that that I can. Thank you .
[Dr Sreekala speaking] Thank you. Sure we will meet and I we are also very happy to help you any kind of help from our side. If you want then you can sure without any delay we can help you at any time no problem.
[Geri speaking] All right.
[Dr Sreekala speaking] Thank you for giving me this opportunity for meeting all of you.
[Geri speaking] Okay thank you so much. Thank you. All right I'm going to end the meeting soon.
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