Watch this Video. Ms. Rohini- MS patient from Suriname shares about his amazing experience after HSCT at JCI USA accredited World Class Hospital in India.
Watch this video where Mr Johannis – MS patient from Holland shares his true experience about getting HSCT at JCI USA Accredited World Class Hospital in India.
Jayne travelled from England to HSCT Hospital India for HSCT for multiple sclerosis. Before treatment she could not walk well, her balance was poor, and fatigue is the symptom she calls her main issue.
Her own stem cells went back in on 11 June. After about a week of her body working hard, her mother in law describes her standing up by herself, with her feet no longer dragging.
She recorded her account five weeks after arriving, with her mother in law beside her, who was with her as her attendant.
Jayne is one of more than 1500 MS patients treated at HSCT Hospital India. The published HSCT success rates for MS are reported across the wider medical literature.
Jayne: HSCT for MS Results at a Glance
Patient
Jayne, United Kingdom
Condition
Multiple sclerosis
Treatment
Autologous HSCT at HSCT Hospital India, New Delhi
Time in hospital
Five weeks, with her mother in law beside her as attendant
Reinfusion
11 June, which she calls her second birthday
Walking before
Could not walk very well. Balance was poor.
Walking after
Standing up by herself. Feet no longer dragging.
Sickness during chemotherapy
None across the four days. Slight nausea only.
In her words
“Every day has got better and better.”
HSCT Hospital India is a JCI-USA accredited hospital in New Delhi, accredited alongside NABH and NABL. More than 1500 MS patients have already been treated there, and patients come from 30 countries. Treatment is given in a deluxe private room with triple level HEPA air filtration, at one all inclusive price of 30,000 USD, with no long waiting list.
A world class team of HSCT specialists reviews each case and gives a free expert opinion on whether HSCT is suitable. There is no cost and no obligation. An HSCT case manager answers every enquiry personally, in English, by email or on WhatsApp, and is happy to talk it through at whatever stage the family has reached.
Jayne is from England. She lived with multiple sclerosis before she came to HSCT Hospital India in New Delhi for haematopoietic stem cell transplantation, the procedure usually written as HSCT.
She travelled with her mother in law, who was with her as her attendant. The two of them shaved their heads together before treatment started, so that Jayne would not go through that part alone.
Life Before HSCT
Jayne is direct about how bad it had become. She could not walk very well. Her balance was terrible. Fatigue was the symptom she names as her main issue, and she was tired all the time.
She was also aware of the direction of travel. In her own words the decline was going downhill and she could feel it moving further through her body. She describes herself as not an old lady, with life still in her, and says plainly that she wanted it back.
What Was Available to Her at Home
Jayne is careful about this and says it herself on camera. In the United Kingdom she was given medication, she calls that fantastic, and she says the people looking after her were really helpful. Her point is not a complaint about her own care.
Her point is about access. She says HSCT was not something she could get in England, that she hopes it will be available there within about five years, and that it was not available to her at the time she needed it.
Jayne received autologous non myeloablative HSCT. Autologous means her own stem cells were used rather than a donor’s. Non myeloablative means the conditioning chemotherapy is dosed to reset the immune system rather than to clear the bone marrow completely. The procedure runs in four stages, and Jayne describes each of them.
Stage
What happens
What Jayne reports
1. Mobilisation
Growth factor medication moves stem cells out of the bone marrow into the bloodstream.
A full set of tests from day one, which she calls fantastic, then a drip that moved her stem cells out.
2. Harvest (Leukapheresis)
Blood passes through a machine that separates and stores the stem cells, then returns the blood.
She compares the machine to a dialysis machine. She had expected something else and says it was really good.
3. Conditioning
Chemotherapy clears the misdirected immune system.
A day of rest, then four days of chemotherapy with no sickness at all, then a fifth day of rest when she felt floppy.
4. Reinfusion
Her own stored stem cells go back in and rebuild the immune system.
11 June, which she calls her second birthday. About a week of feeling her body work hard, and then, in her word, she blossomed.
She describes the doctors as a fantastic team, the staff as fantastic, and the room as beautiful.
What Changed, and When
The week after reinfusion was hard work. Jayne calls it a struggle, her body fighting itself, and she says so without dressing it up. After that week the changes came quickly, and she measures them day by day rather than week by week.
Before HSCT
By the time she filmed this
Could not walk very well
Standing up by herself
Balance was terrible
Feet no longer dragging, legs working better
Fatigued and tired all the time, her main issue
Sleeping through the night
Her speech affected
Her voice back, in her own description
Declining, and able to feel it
Every day better than the one before
Jayne says she feels stronger, that everything is stronger, and that this is only the start of it.
Patients arrive at HSCT Hospital India at every stage of MS, from newly diagnosed to long term progressive. A world class team of HSCT specialists reviews each case individually and shares a free expert opinion on whether HSCT is suitable, with no cost and no obligation.
Jayne’s mother in law travelled with her and was with her as her attendant. She shaved her own head alongside Jayne before treatment began.
Her account is about what she watched happen. Jayne standing up by herself. Jayne retraining her body the way a young child learns, because her body was rebuilt and she had the chance to start again. Jayne no longer dragging her feet, and becoming very independent.
In Jayne’s Own Words
“I’ve blossomed. I’ve changed. I’ve had such amazing results in this.”
“I’ve achieved so much in the last five days. Every day has got better and better.”
“I’ve got my voice back, which is my speech… My legs are working better. Everything’s stronger. I feel stronger, and this is only just the start of it.”
“I urge you to do it, anybody with MS. It was worth it. It changes your life totally.”
Jayne’s Video Testimonial
Transcript, lightly edited for clarity
Jayne: My name is Jayne and I’m from England. This is my mother in law. She’s my mum now, but she’s really my mother in law. We travelled many miles to get here today for this treatment.
Her mother in law: Not today, but obviously five weeks ago, treatment for Jayne. So how did your treatment go, Jayne?
Jayne: It went so well. From day one we came here, they did a barrage of tests on me, which is fantastic. Then they started the migration of the stem cells by giving me a drip of growth hormone, and that created the migration of the stem cells. Then they were collected, and they were collected from a machine like, almost like, a dialysis machine. Your blood goes in and your stem cells are kept and your own blood goes back into your body. So that was really good. I thought it would be something else, but that was really good.
Then I had a day of rest. Then there were four days of the chemotherapy, which I was not sick at all, which was fantastic. A fifth day of rest, I was a bit floppy.
Her mother in law: So there’s no sickness. Jayne wasn’t affected by sickness, a little bit of nausea here, but apart from that all good. We shaved our heads before the treatment, just to help Jayne get through all of this.
Jayne: Which is great. And then the doctors, and every, all the team, a fantastic team of doctors here, reinjected the stem cells to me on the 11th of June, which is my second birthday, like the Queen. Since then it’s been a struggle for about a week, my body fighting itself I think, all the blood developing and that. But I’ve blossomed. I’ve changed. I’ve had such amazing results in this, and I urge you to do it, anybody with MS, to try and do this and have a go and do it, because it was worth it. It changes your life totally, and it’s really, really positive and really, really good.
Her mother in law: One of the things that Jayne has achieved since, obviously before, when she had MS [remark omitted]. Jayne is able to stand up by herself. She’s retraining her body just as a young child would, because she’s had the chance, her total body rebuilt. And her feet, she’s not dragging. She’s very independent and she’s achieved a lot, an awful lot, and we’ll carry on doing so.
Jayne: I’ve achieved so much in the last five days. Every day has got better and better. Whereas before, when I had MS, I was really bad. I couldn’t walk really very well. Balance was terrible. I felt so, so fatigued and so tired all the time. That was my main issue. It was just horrible, and the decline was going downhill and I could feel it further on my body. And coming here, doing this, is just totally transforming me, totally, as a person.
I’ve got my voice back, which is my speech, which my husband would be well happy about. But yeah, I can’t explain to you how good it is. My legs are working better. Everything’s stronger. I feel stronger, and this is only just the start of it. I’m sleeping through the nights now.
Just to say how good the doctors have been to me. And obviously she is my care person. It’s been a long journey but it’s gone really quickly. The rooms are beautiful and everything. All the staff are fantastic and all the doctors are lovely. I can’t express how good it’s been.
And I think anybody with MS, give them the opportunity, wherever in the world, however they do it, whether they fundraise or they can afford to do it, or however they do it. Do it. Go for it. Go for it. Because I swear, if you sit back and do nothing you’re just going to rot.
And in the UK they give you medication, which is fantastic. I’m not moaning about that at all, they’re really helpful. But you can’t get HSCT in England, really. You have to get it. Hopefully it will happen. It will happen in the next five years I think, but not yet. But I urge anybody like myself to do it. I classify myself as not an old lady, and I’ve still got life in me, and I want it back.
Talk to HSCT Hospital India
HSCT Hospital India is a JCI-USA accredited hospital in New Delhi, accredited alongside NABH and NABL. More than 1500 MS patients have already been treated there, and patients come from 30 countries. Treatment is given in a deluxe private room with triple level HEPA air filtration, at one all inclusive price of 30,000 USD, with no long waiting list.
A world class team of HSCT specialists reviews each case and gives a free expert opinion on whether HSCT is suitable. There is no cost and no obligation. An HSCT case manager answers every enquiry personally, in English, by email or on WhatsApp, and is happy to talk it through at whatever stage the family has reached.
