Gudrun R travelled from the United Kingdom to HSCT Hospital India for HSCT for relapsing remitting multiple sclerosis. She arrived pushing a rollator, able to stand for two or three minutes before she needed to rest.
Five weeks later she was walking with a stick, and taking short walks without it.
Her neurology team at home had advised her against coming. She came anyway, and she filmed what happened.
Gudrun R 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.
Gudrun R: HSCT for MS Results at a Glance
Patient
Gudrun R, United Kingdom
Condition
Relapsing remitting multiple sclerosis, diagnosed 22 October 2007
Treatment
Autologous HSCT at HSCT Hospital India, New Delhi
Time in hospital
Five weeks, with her husband beside her as attendant
Walking before
Rollator. Two to three minutes standing, then rest.
Walking after
Stick. Short distances with no stick at all.
Pain reported
None
In her words
“Every single day after the stem cell transplant I have achieved one thing.”
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.
Gudrun R is from the United Kingdom. She was diagnosed with relapsing remitting multiple sclerosis on 22 October 2007 and lived with it for over a decade before she looked into haematopoietic stem cell transplantation, the procedure usually written as HSCT.
She travelled to HSCT Hospital India with her husband Mark, who stayed with her as her attendant for the full five weeks. She arrived on a Monday, the 14th of May.
Life Before HSCT
Gudrun describes a steady decline rather than a sudden collapse. Around the house she could manage two or three minutes on her feet, then had to stop and rest, then go again. She used a mobility scooter at home and a wheelchair for longer distances, and on the day she travelled she was walking with a rollator.
She is direct about where she believed that was heading. In her own words she was going down and down, and expected to end up bedridden within a year, or two, or three.
What Her Own Neurology Team Told Her
Gudrun raised HSCT with her MS team in the United Kingdom the previous October. They advised her against it and invited her and Mark to a seminar, which included a half hour section on stem cell treatment.
Both of them came away from that half hour feeling it had been built to put them off. The treatment was described to them as quite painful. When Mark asked about MRI scanning, her neurologist closed the conversation by telling her to go ahead and do it if she wanted to.
She took him at his word. What she experienced at HSCT Hospital India was different from what she had been prepared for, and she says so plainly on camera: no pain at all.
Why She Chose HSCT Hospital India
Gudrun and Mark researched which countries offered the procedure. She looked at Russia first, then found India, and says she had not realised until then that it was an option.
She completed the eligibility form, went through the criteria and was approved. A date was set for arrival, the information pack followed, and payment and communication were straightforward. Her account of the administration is short because nothing about it gave her trouble.
Gudrun 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.
Stage
What happens
What Gudrun reports
1. Mobilisation
Growth factor medication moves stem cells out of the bone marrow into the bloodstream.
No pain.
2. Harvest (Leukapheresis)
Blood passes through a machine that separates and stores the stem cells, then returns the blood.
No pain.
3. Conditioning
Chemotherapy clears the misdirected immune system.
No pain.
4. Reinfusion
Her own stored stem cells go back in and rebuild the immune system, with platelet support alongside.
Sitting still for the platelets, dropping from three hours to fifteen minutes across the stay.
Every nursing aspect, in her description, was spot on. She rates the food the same way, and says her own daily treatments ran as regular as clockwork.
What Changed, and When
Gudrun worked through physiotherapy in stages after her reinfusion. Within two or three minutes of one of those sessions she was walking with a stick. Her rollator went that same afternoon and she did not go back to it.
From that point she set herself one thing a day. Getting out of bed. Walking with the rollator. Walking with the stick. Then a few short distances with no stick at all.
Before HSCT
By the end of her five week stay
Walking with a rollator
Walking with a stick, rollator no longer used
Two to three minutes on her feet, then rest
Short distances covered with no stick at all
Mobility scooter at home, wheelchair for distance
Building toward doing her own grocery shopping alone
Expected to be bedridden within one to three years
Achieving one new thing every day since reinfusion
She keeps her stick with her for security and for confidence, and is already walking short distances without it. Her doctor called her every day through the stay, and she describes the response from the doctors and the physiotherapist as thumbs up, high fives and fist bumps.
Her stated aim when she goes home is to do her own grocery shopping, by herself.
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.
“What my expectations were, from what my neurologist had told me, were quite different to what actually happened. No pain. Absolutely no pain whatsoever.”
“Every single day after the stem cell transplant I have achieved one thing. One thing every day.”
“I would definitely, definitely recommend this. My aim is to do my shopping, my grocery shopping, by myself, and everything else by myself. That’s my aim, and I can’t wait.”
Mark, her husband, was in the room with her for the whole five weeks. His summary is that the attendant is an essential part of the stay, because however good the staff are, the patient needs support from home as well. Gudrun’s reply to him on camera was that he saved her life.
Gudrun’s Video Testimonial
Full Transcript
Gudrun: I’m Gudrun from the UK. I was diagnosed with MS, relapsing remitting, on 22 October 2007, so it’s been quite a few years I’ve had it.
I decided back last October that I’d look into having stem cell treatment. I’d heard about it, where to have it done, things like that. I approached my MS team and they advised me against it, but invited me to a seminar where they were discussing stem cell treatment. Me and my husband went along to that for a few hours. They did talks and everything, as a seminar, and they did a half hour section on the stem cell. Me and my husband found it very, very negative. He explained the treatment as quite painful. It just was trying to put us off, really. He didn’t really want anyone to do it. And my neurologist, when my husband questioned him about MRIs and all this, at the end of it just said, go ahead, do it if you want to. It felt like, you know, just go ahead if you want to.
So I said to my husband, well, yeah, I’m going ahead with it. So we’ll find out what countries to go to, find out all the information. And I came across India, because at that time I was researching Russia, and then India, because I didn’t realise. So I picked India to have a look at. I filled in the form and heard back. We filled in the forms, all the criteria, and I was approved. Then she found a date, the 14th of May, Monday the 14th of May, as the date of arrival. Confirmed all that, sent out all the information, got the ball rolling, basically. And I arrived here on the 14th of May, all sorted. Payments easy. Communication very good. Everything went very smoothly.
And I arrived here, and what my expectations were, from what my neurologist had told me, were quite different to what actually happened. No pain. Absolutely no pain whatsoever. The only uncomfortable little bit was when the platelets went in. The first few days was about three hours of being sort of motionless, and then the following couple of days after, it went down to about an hour, and then the last couple of days of the platelets it went down to fifteen minutes and I was, as I call it, back in the room.
Every nursing aspect has been spot on. Perfect. All the food has been perfect. Everything, cups of tea and biscuits, spot on. And my treatments that I do myself have been as regular as clockwork. All the exercises with my physiotherapist, stage by stage. Within two minutes, three minutes I was walking with a stick. My rollator went within that afternoon and I was walking with my stick. And today I’ve got some more exercises to do, squats and everything. I will build on that.
Every single day after the stem cell transplant I have achieved one thing. One thing every day. Like getting out of bed, walking with a rollator, walking with my stick. And I’ve done a few little walks without my stick as well, but I keep my stick on me just for security, just to get my confidence. And taking my pills all the time, and that will be ongoing for when I go home. Dr G calling every day, giving me the thumbs up. I’ve had a couple of high fives and a couple of fist bumps off the doctors, and the physio. So everyone’s been really pleased.
I would definitely, definitely recommend this. To me it’s going to put my MS behind the door and lock it. That’s how I feel about it. Previously, before the stem cell, I was just going down, down, down, down, down, to end up probably within the year, maybe two years, maybe three, bedridden. Not doing anything, because all I was doing was walking around the house for two minutes at a time, three minutes, and I’d have to stop and rest, do some more, stop and rest. It was just a downward spiral. I use my scooter at home, I use my wheelchair for long distances.
I intend to improve on that, using a trolley, and I’ll build myself up, which I will, with the exercise. My aim is to do my shopping, my grocery shopping, by myself, and everything else by myself. That’s my aim, and I can’t wait. I’m really looking forward to it.
Mark, Gudrun’s husband and attendant: Hi, my name is Mark. I came over to support my wife, Gudrun. We were met by the doctor, where we had a meeting that explained everything that was going to happen, so she expected everything to go like clockwork, which it did.
The room itself, we’ve stayed here now for five weeks, which is a long time to be stuck in one room, but the service has been excellent. We’ve been having regular food. Because we’re English speaking it took a little bit of time, but we were shown how to find the English channels, so we’re watching the BBC News, and film channels are on twenty four hours, so if you wanted to watch a film you were okay. Saying that, we were both in bed for nine o’clock, because we were up at six with the cleaner lady and the cups of tea and things, which is great.
Overall it’s been a really positive experience. She’s really happy, and I’m happy that she’s happy. The attendant is an essential part, because if the attendant wasn’t here to help me, I would have struggled a little bit.
Gudrun: You saved my life.
Mark: It’s just important to have someone to support whoever is having the treatment done, because however good these people are, they need the support from the home. And we’re just looking forward now to going home in two days’ time and carrying on the good work that these guys have done.
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.
Following extensive research into various therapies available all over the world for MS, We found HSCT hospital in India to be a possible option for treatment.
