Rare Diseases Patient Testimonials

Budd Chiari Syndrome Patient 
- KS

My wife began experiencing a gradual loss of appetite, along with swelling in her feet, which worsened over the course of several days. Despite not eating much, we noticed a significant weight gain, which prompted us to consult a doctor. After conducting several investigations, it was revealed that she had developed ascites. She was immediately admitted to the hospital, where treatment was started.

However, after two weeks of treatment with no improvement—her abdominal swelling and distension even worsening—she was referred to specialty care. There, she was diagnosed with a rare condition called Budd-Chiari Syndrome. The specialists recommended surgery, but after considering the potential complications, we decided against it and opted for Ayurvedic conservative treatment instead.

When we visited Rasayu Clinic, my wife was in critical condition. She had severe abdominal pain, flatulence, loss of appetite, nausea, vomiting, and generalized swelling. Given the size of the obstructions in her veins, her condition was critical. Dr. Bendale took the time to explain the prognosis, while reassuring us that he would do his best to guide her through this difficult time.
We began treatment with Ayurvedic medicines, and within the first month, we noticed considerable relief in some of her symptoms, including a reduction in swelling. We continued the treatment, with Dr. Bendale advising regular investigations to closely monitor her condition. After three years of consistent treatment, the USG results showed that all clots and blockages had been resolved. More importantly, my wife became completely stable with hardly any symptoms remaining.

This outcome felt like a miracle, especially considering how hopeless we had felt at one point. The credit for this extraordinary recovery goes to Dr. Bendale, whose expertise and care have made it possible for my wife to be alive and in excellent health today.

Ocular Cicatrical Pemphigoid Patient
- MP

Two years of relentless, agonizing eye pain had stolen my peace. My left eye was shrinking, and my ophthalmologist's diagnosis of ocular cicatrical pemphigoid, with the looming threat of a biopsy, plunged me into despair. Sleepless nights became my norm, haunted by the fear of losing my vision. I was lost, hopeless.

Then, a lifeline: Rasayu Ayurved Clinic. A relative's recommendation led me to explore Ayurvedic treatment. Within just four months, I experienced a remarkable 70% reduction in pain. Now, after a year of dedicated care, I am completely pain-free. It's a miracle. The compassionate team at Rasayu Ayurved Clinic didn't just treat my condition; they restored my hope and gave me back my life. From the depths of despair to the joy of pain-free vision – I am eternally grateful.

Isovaeric Acidemia Patient
- AJ

It was a normal day at the clinic.

Patients were sitting in the waiting room. Assistant doctors were taking cases. Staff members were rushing from one room to another, one of them was getting healthy welcome drinks for the cancer patients, one was making notes in the appointment book, one was calling up patients to inform them that their medicines were ready.

My Dad was sitting in his cabin. Students like me had gathered around the examination table, trying to observe, as part of our larger goal of getting an insight into clinical practice.

“Don’t worry! You’re going to be completely fine!”, my dad said in his cheerful voice. The patient smiled, thanked him and left the room.

An assistant doctor checked the name on the case paper in his hand and called the next patient in.

It was a couple. The woman was holding a beautiful baby girl in her arms as she sat at the desk. Her husband carried a bag full of files. They were coming from one of the most well reputed hospitals in the city. Dad greeted them and started going through the case history.

The room was completely silent. As medical students, we have always been taught to closely observe the patient and their behavior. The woman’s face reflected her anguish.

After about fifteen seconds she couldn’t hold it in any longer and she broke down in tears. She gently kept her baby on the desk, and spoke -
The doctor at the hospital said, “Think of your baby as a guest visiting you for 15 days. Only.” It was a case of Isovaleric acidemia. A rare genetic disorder in which the body is unable to properly process proteins, leading to a toxic buildup of isovaleric acid in the blood, capable of causing significant morbidity and MORTALITY.

Her complications included hyperammonemia, which meant that her kidney and liver functions were seriously screwed up and could lead to possible encephalopathy (brain disease) and death. The incidence of IVA has a range from 1/62,500 live births in parts of Germany to 1/250,000 in the United States.

So basically, the baby would throw up any time it was fed any sort of food. It was incapable of digesting anything and everything, including breast milk. The solution that had been suggested to them by the doctors at the hospital was to feed her the food that is manufactured for astronauts to consume when they go out into space. The only source for that sort of food in India was a company in New Delhi. The food cost ₹ 10,000 for 400 grams and would be delivered approximately two weeks after the order had been placed.

The estimated life span of the baby was 15 days. 360 hours.

My Dad looked at the ‘Age’ bullet on the case paper. It read - ‘14 days old.’

One might think: It's a tiny living being, weighing barely a few kilograms.
A tiny living being, who has no idea who it is or what is going on around it.

A tiny living being, with metabolism so messed up, and with even tinier immunity that it had a super not-so-tiny chance of potentially being dead in the next 24 hours.

And the doctor was expected to come up with a miracle which would cheat death.

Is that even a reasonable thing to ask for?

But for the parents sitting in the cabin that day, it was EASILY and MOST DEFINITELY one.

Not a single person in the room was even remotely capable of trying to imagine what was going on in the minds of the parents. The tiny shoes and tiny clothes, bought a few days ago waited in the shopping bags in their closet. The tiny crib put together by the love of a young father, waited in their bedroom.

Would their baby not see the break of dawn, next day?

Would their baby not breathe the next day? Would their baby never say its first word? Would their baby never stumble and fall while trying to take its first steps?

Would their baby, never EVER open its beautiful eyes again and look at its parents?

Would their baby, whom they loved oh-so- much, leave them and just go?

Two helpless parents.
Wanting their baby to breathe. Wanting their baby to cry and stumble and fall. Wanting their baby to smile and look at them. Wanting their baby to be able to live.
Humans have definitely made progress. In a lot of fields of science. However, we still cannot win against nature. We HAVE TO accept that we are part of it, and things won’t always be our way and won’t always have an ending, as happy as we would want it to be.
All we can do is try.

The mother pulled herself together and took a few deep breaths.

Dad looked at the two helpless yet incredibly strong parents sitting in front of him. He discussed details of the case with them. Told them honestly that he had never treated this disease in the past. They were well aware of the survival rate and had no hopes whatsoever. Dad told them that he will do his best. But since it was a mere effort and no results were guaranteed, he told them that he won’t take any fees from them. He discussed the treatment plan with them. The treatment was planned for the baby as well as the mother. For the mother, eventually hoping that she would be able to breastfeed her baby, without the baby vomiting it. Thus, ensuring that the baby’s metabolism improved and allowed the ingestion of medicines.
A treatment plan of merely 7 days.

But a treatment plan, well thought out. He asked the parents to give him regular updates. The treatment began. Everybody knew the limits of medicine. Nobody expected anything. Nobody knew what possible treatment would save the dying patient. But still hoped that whatever treatment was planned, would work. Still hoped that there would be a miracle. Still hoped that the parents would be lucky enough to see their baby live. Nobody forgot about that case.

Everybody went about with their own lives. This was on 11th January’ 2014.

A few months ago, a newly appointed assistant doctor noticed a box on her desk. She asked her senior what it was. “It’s a cake. Remember how I told you about the case where a baby was given just 15 days to live?”
“She turns 7 today.”

- Dr. Eeshani Bendale

Idiopathic Thrombocytopenic Purpura Patient
- BC

I was living my normal routine life. Suddenly I started getting red patches on my skin. I consulted a physician and he advised some blood tests which showed low platelet count.
The physician advised me to take steroids. I took steroids for a year and still there was no increase in platelet count. Then I consulted a haematologist who advised me surgery for the removal of my spleen. I got very tensed by this advice and was depressed. I went for a second opinion and consulted another physician. He also advised me to take steroids. I took it along with some Ayurvedic medicines from Hyderabad.

I took steroids again for almost a year but my platelet count was not improving, rather it was between 30000-70000 only.
I was very much stressed and was not able to understand why my platelet count was not increasing in spite of taking medications.

For 3 years I did not take any medication due to frustration. My close relative suggested consulting Dr. Bendale for this issue. At the time of my first consultation with Dr. Bendale my platelet count was only 6000 which meant there was a high risk of internal bleeding at any given time.

He advised some Rasayan therapy. I was very sceptical about the medicines after my previous experience with another Ayurvedic physician.
After one month of treatment my platelet count raised to 44000, gradually it raised to 1,41,000 in 4 months which was totally normal, later to 1,64000 and now my platelet count has further improved to 2,29,000.

Thank You, Dr. Yogesh from the bottom of my heart!

Biliary Atresia Patient
- HG

In Nov 2018, we were blessed with a heavenly soul, a cute little son. But we noticed his body and eyes were dark yellow coloured, in the beginning we felt it is regular jaundice, but as we did not find any improvement, we rushed to a paediatrician. After going through series of tests, the doctor conveyed to us that he was suffering from a very rare condition called Biliary atresia. The only possible treatment to this was liver transplant and that too after the baby completes one year. We all were shattered. The biggest question was possibility of this survival till the age of one year.

In May 2019, a friend of ours suggested to consult Dr. Yogesh Bendale at Rasayu Clinic. I had heard that Dr. Yogesh is very positive and result-oriented in his approach. After examining our son, he planned treatment in view of his survival and health at least till one year so that liver transplant can be possible. The course involved a treatment that was given to both of us me (mother) and child.

Slowly, steadily our child's condition started improving. His weight started Increasing, his milestones progressed property. I remember in Aug 2019 he passed yellow-coloured potty. This was first time after his birth. His appetite had also improved; yellow colour of eyes had also significantly reduced. Today he is 2 years, very active and fine. His bilirubin has reduced from 15.56 to 1.55. We have not taken a decision of liver transplant yet, but I am pretty sure he will not need liver transplant considering his present healthy condition.
I remember I was crying as I had no hopes during my first visit and now, I visit Rasayu Clinic with a big smile on my face. Thank you, Dr. Yogesh Bendale and Rasayu Clinics. When he came to know about my financial condition, he gave us all medicines at zero cost. Dr. Bendale came into our life to save my son like God Thanks a lot doctor.

Aplastic Anaemia Patient
- JS

My father is 72 years old. One day, I observed that he had developed rashes all over his body with severe aching. He also noticed bleeding in his stools. Sometimes clots were noticed by him. His weight was also gradually decreasing. We consulted a general physician who referred him to Hinduja Hospital for further investigations and management. On his clinical examination and investigations at Hinduja hospital, he was diagnosed with aplastic anaemia with purpura.
Treatment was stared at Hinduja hospital. He was put on Methotrexate and some other medicines, even after a month no significant change was noticed in his condition. On the contrary, side effects of methotrexate started bothering him. So, the medicines were changed. Tab Eltrombopag was started which alone costed approximately 2 lacs per month. In spite of blood transfusion, painful injections, costly medicines, my father's health was not improving.
So, we decided to find an alternative option. A relative of ours was an old patient of Dr. Bendale who suggested us to consult him. I met Dr. Bendale in June 2019. At the time of consultation, my father had complaints like weakness, poor appetite, gradual weight loss, constipation with sometimes blood in stool, low urine output and itching all over the body. As a son, I also had a lot of concerns about his health and prognosis. Dr. Bendale patiently listened and addressed my each and every query and concern. He advised Rasayan therapy for my father
From the first month of treatment, my father started feeling better. This was the first time since my father's illness when I saw some positive sign. As the treatment continued, we noted a significant change in his clinical condition. The frequency of blood transfusion had also reduced from 4 times a month to 2 times a month and no further blood transfusion was needed after Jan 2020. That means within a span of 7 months of Rasayan therapy, he was completely off blood transfusion. Because of this, his conventional medicines were reduced in doses and number.
He was very happy as hospitalization for transfusion was not required anymore.
Currently he is quite comfortable. His routine has returned to normal. I must appreciate Dr. Bendale and his team for not only testing my father, but also taking nis utmost care and providing on-time consultation and medication during the challenging tune of lockdown.

Myelodysplastic Syndrome - Pure Red Cell Aplasia Patient
- MS

The year was 2010: 14-year-old Veera had no idea what was happening when she suddenly started experiencing a tremendous amount of body ache. Her arms felt weak, her legs feit weak, She couldn't walk further than a few steps in her house Her body temperature shot up and she didn't feel like eating anything at all. She nad started looking extremely pale and she'd started losing weight too. The fatigue and the fever made her mass her ath grade classes. Little did she know that she was suffering from one of the rarest cancers ever known to man. Myelodysplastic Syndrome.

According to the National Cancer Institute, NIH, USA, this is a type of cancer in which the bone marrow does not make enough healthy blood cells (white blood cells, red blood cells arid platelets) and there are abnormal cells in the blood and/or bone marrow. MDS occurs as a result of a mutation in one or more of the genes that control hlood cell development. Some consider it to be a pre-cancerous stage which can lead to AML-acute myeloid leukaemia, which is a type of blood cancer.

The incidence of MDS is around 4-5/100,000 and about 90% cases are found in patients above the age of 60. Extremely occasionally is it found in children According to the risk group of each patient, the median survival varies from 0.8 years to 8.B years. She was at an increased risk of developing anaermis, recurrent infections, uncontrolled bleeding and eventually AML The hospital that she was admitted in advised her to go for Blood Transfusion, After the 2nd transfusion she was advised to go for a Bone Marrow Transplant (BMT), Unfortunately, none of her family members were matches and they couldn't find any donors for the same. Until they found a match for her BMT, she had to go on with the transfusions Her body and her survival became dependent on how often and how much blood she received through the transfusions. The frequency of the transtutions started increasing. There came a point when there was no blood available for her in the Kespital's blood bank and her family had to arrange for it from other blood bank on their own. The normal Haemoglobin levels in an Indian female are considered to be between 12-15 gm/di. At one point of time, Veera's Hb dropped to 2.1 gmidi.

Her RBC, WBC and platelet counts were incredibly low as well. Meanwhile, Veera's family realised that their insurance policy did not cover this rare disease at all. The awrage cost of a blood transfusion in India is 1,000 and that of a bone marrow transplant can be anything between 20 lakhs to 35 lakhs. The year is 2014. The month is September. It's been about 5 years since Veera is receiving blood transfusion, the frequency of which has now reached to twice/week. She has become completely dependent on the transfusions for her survival. Her weight has dropped down to 38 kg. Constant hospital visits. Weakness and fatigue. Missing school and all other social activities. Not being to able to talk to her friends about what she was going through. Not knowing if there is any treatment which would get her out of this once and for all How do you tell your body to buckle up and fis yourself and the strong? Heromptoms d'educed with but the gilshil decided to appear for her 12th grade examinations. Were the transfuscosa Enal Would they over zhon? Were they addressing the actual font cause of her sale of cutt creating hor levels temporarily for a few days until it was time she needed to go for the next one? The equency just seemed to be increasing. If she was getting strong shouldn't the frequency reduce and emituelle stoo? Fat that potion didn't seem possible anymore as there came a point where her family no longer afford to go for binod transfusions this frequently at now? Her own body isn't able to produce blood efficiently for her and she can't take blood from eternal sources anymore. There is no donor available for a bone marrow transplant and even if there were, her family couldn't afford it. If only there were some form of treatment which would address the root cause ce and for all and help ner system the it and become potent enough to make blood with all the right quality and quantity of blood cells. This was because of a mutation after all and giving blood externally would only help her hang on for a while unless there was something that made her body stronger from within which would ensure a longer lifespan with good quality of life.

Her mom, a housewife, her dad, a govemment contractor officer and her brother, a civil contractor-all of them left no stone unturned for their vee, as they call her. They didn't talk about it in front of her then, but they had to sell their gold and their car to arrange for money for her transfusions.

What is materialistic wealth after all, in front of the health of your near and dear ones? Yet today, if costs 10 much to stay alive. Is anybotty really strong enough to bear the brunt of knowing that your family member had to lose out on their life because of financial limitations? It all seemed hazy for Veera's family. After trying about half a dozen other solutions, Veers and her family decided to turn towards Ayurved as a last resort. So cow, the disease has progressed and there is no other viable treatment option available Two huge stacks if tiles and reports were plonked on the table in front of Dr. B. "These are alt her reports utte now" said Weera's brother, Arnav Dr. Bendale read the case files carefully. He had rever treated a patient suffering from this disease before. He made sure that Veera and his family knew that. "We aren't expecting anything We just want to give it one last shot. There is nothing else that can be done said Veera's mother. Again, the irony. A science which focuses first and foremost on preventing diseases from developing in the first place. a most often opted for as a last resort especially in tare diseases like these. In the worst posisie stuations when the disease has progressed so much, it's a huge challenge to dive in and save the potent who's body is giving in and who's mind has lost all patience and hope of becoming better anytime soon. Armas explaned that they can orily pay part of the fees. "It's okay Play only as much as you can sat Bendale Row he started to explain the course of action to them. "There are about number of things that hent to be fixed. We'll address each of them in a panicular order. Her body is dependent on the transfusions as of now. The moment she won't receive trasfusion, all her levels will drop and she'll fees very weak.
We'll continue the transfun and startour treatment along with it. Only stop the transfusions when I tell you to. Along with her symptomatic alid clinical responon, we'll conducts every love weeks to make sure that we're on the right track. We need to assess her entire resons brochemically as well. Lat's see how far we can go Veera's arms were full of tunes because of the needles ning to them duong the transfusions. She felt weak mentally as well. She had no idea what was taking and it would work or not. But weit, a last resort Patiently our younggherringer At the inedicines had to be taken orally. And so in began The horquency of the anced slowly and win x months of starting his treatment, Dr. Bendale said that they cold the Her last blood transfusion wies on 25th March 2015.

The year is 2017. The month is June, Weeric's treatment with Dr Sendae has stopped. However, we are still monitoring all her levets and symptoms even after stopping the treatment сливе 2017.

Veera's HD is 34.3 which is hard to indenform the diameter lastarecomplee armal From hand to receive two blood transfusionary wees to survive to nothing single one since 30 months. She has nome of the comblications which are expected to develop arth MOYL A Pervellow are almind twice of those that the had when she was getting fromssions completely symptom free now. She's weighing 52 kg. She's healthy She's happy Now. Transfusions, surgeries, framsants the necessity and the essentiality is completely appreciated and watuet In act. Ayurved is the science that wroduced surgery to the world 5000 years Inve treatments are an absolute necastily in a lot of cases. The question is what if the patient can't afford to for the same? Are these treatments always fable for the average Indian Can there be another viatio Sreatment option? Or that doesn't be the patient dependenterall sources for their subie actually incres the cation body to become stronger and fight against the disease on its that nortuner is to the supported by external sources. Even when she wis going for transfusionsturce she still wasn't completely symptom free and all her fest levels were almost half of what they are right now after she has completed Ayurvedic treatment. There was a point when she was going to stop transfusion completely because of financial reasons, What would have happened then? How much would her heal he have been alive today? Now all the questions that I had after finding out sbour this case-Has MDs been mentioned in Ayurved? lantions of the rest wa There sharifyer? Isn't it caused by a genetic mutation? Have Ayurvedic medicines acted e a genomic level here? What is in about the understanding of the human body according to a 5000-year-old science that helped treat this giri? Have we completely cured her from this cancer/pre-cancerous stage Have we actually prevented her from developing blood cancer which is a highly strong possibility in Mps patients? Will this treatment always be effective in other patients with MDS as well? How will we know unless wy meat more patients suffering from this disease?
How will know if Ayurved can help devise a solid treatment module for MDS patients unless it is stüdine in an open-minded way? How do we know what effect these herbomineral compounds (which have bee prepared uter processing them with the utmost precision and quality controll had on the celts in Veera's body? This isn't a case study. It's just one case, one story, one life that matters. The years 2019. The month February It's been 10 years since Veera was diagnosed with MDS. (The median survival ranges from ga to 8.8 years) It's been 4 years since she stopped her blood transfusions completiny. I'm chatting with Veers in a cabin in the clinic. She's seling me all about her journey. "I couldn't play in my solleyball team anymon I didn't tell any of my friends. I couldn't go out. Only I know how I gave my exams I had never felt so we Everything around me was shattering into pieces." "And how do you feel now?" I asked her how fit as a Kadle she smiled.

There was a time when I was told that I couldn't appear for my 12th grade exams because of my health Now, I just finished my graduation and I'l be appearing for my MBA entrance sest next month!" Her face was glowing as she said that I couldn't help but smile at the human being sitting in front of me. Ayurved believes that a treatment works best in patients with good sattva Bebeve it or not, a calient gets better cely they want to get better. Veera is a fighter and she knows it now Her family has been her greatest strengh throughout her joumey I think the greatest lesson that a doctor learns in the clinic from their patients is how to be strong and how to keep fighting, no matter what "You're a mal-lite Wonder Woman, you know that right?" I asked her She laughed. "My brother keeps teasing me, you know she went on about the beautiful subtleties in her life, as we hogged on kaju katli that evening.

-Dr. Eeshani Bendale