Watch this video where Mr. Jacobus from the Netherlands shares his happy experience about travelling to India with his girlfriend as a Caregiver for HSCT
Linda travelled from the Netherlands to HSCT Hospital India for HSCT for multiple sclerosis. She was 36, diagnosed in 2007, and in the two years before she came her health had gone downhill fast.
She had to stop work. Walking normally had become walking with a crutch or using a wheelchair.
She arrived in New Delhi on 20 March and stayed five weeks. In an interview she gave to the Dutch press after she was home, Linda said her stem cells went back in on 2 April, a date she calls her birthday, and that her left leg now travels straight forward again, with no swing and no trick to get it there.
Linda 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.
Linda: HSCT for MS Results at a Glance
Patient
Linda, Netherlands, aged 36 at treatment
Condition
Multiple sclerosis, diagnosed in 2007 at the age of 24
Treatment
Autologous HSCT at HSCT Hospital India, New Delhi
Arrived
20 March, at night
Reinfusion
2 April, which she calls her birthday. Stated in her Dutch press interview.
Time in hospital
Five weeks, with her closest friend beside her as attendant
Disability score before
EDSS 5.5 to 6. Stated in her Dutch press interview.
Walking before
Crutch or wheelchair. In her Dutch press interview, a 100 metre walk to the supermarket was already too far.
Reported after treatment
A difference in walking and in bending her knee, noted before she left. Left leg travelling straight forward again, stated later in her Dutch press interview.
In her words
“I really felt in good hands.”
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.
Linda is from Holland. She was diagnosed with multiple sclerosis in 2007, when she was 24, after going to her doctor because she was seeing double.
She was born in India and adopted to the Netherlands at three months old. Coming back to New Delhi for haematopoietic stem cell transplantation, the procedure usually written as HSCT, meant something specific to her. In her own words, it felt like getting back to where she once began, to get a new second chance.
Life Before HSCT
MS had a large influence on Linda’s daily life. She had to stop work. Some ordinary movements had gone, including opening a bottle. Normal walking had become walking with a crutch, or using a wheelchair. In her Dutch press interview she added that the supermarket 100 metres from her home was already out of reach on foot.
In that same interview she gave her disability score before treatment as EDSS 5.5 to 6. Readers can see what that band means, and where they sit themselves, on the EDSS score calculator.
She describes the last two years before treatment as going downhill fast, and says the frightening part was how quickly the independence she still had could disappear.
Why She Chose HSCT Hospital India
Linda decided to explore stem cell transplant because she wanted to act rather than wait. In her words, she wanted to be in charge of her own life again and do something, instead of only overcoming the MS.
She applied and waited to hear whether she would be accepted for treatment. When the email came, she says she was really, really happy. She arrived in New Delhi on 20 March.
Linda 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 Linda reports
1. Mobilisation
Growth factor medication moves stem cells out of the bone marrow into the bloodstream.
Not described stage by stage on camera. Linda says every new phase was explained in advance, by name, so she knew what was coming.
2. Harvest (Leukapheresis)
Blood passes through a machine that separates and stores the stem cells, then returns the blood.
Not described stage by stage on camera.
3. Conditioning
Chemotherapy clears the misdirected immune system.
The hardest part of the stay. Nurses stayed with her through it, and she says they let her feel she would not be alone.
4. Reinfusion
Her own stored stem cells go back in and rebuild the immune system.
2 April. She calls it her birthday, and says she now has to start again from zero.
The Care She Describes
Most of what Linda talks about on camera is the care, and she is specific about it rather than general.
Doctors came twice a day, morning and evening. They explained each phase before it happened, and repeated an answer she had already been given whenever she wanted it again. When she pressed the alarm, nurses came quickly. When there was an emergency, she says they were there immediately, and she noticed how well the team worked together.
The single thing she calls most impressive is what the nurses did when she was being sick. They put a hand on her back and stayed. She says they let her feel she would not be alone.
She also addresses the doubt directly, because she had it herself. She says a patient coming from another country may worry about India, or about hygiene, or about something else. Her answer is that it is a high quality treatment, that the team are the experts in it, and that she felt safe.
Her stay was five weeks in one room with a television and internet, and she says the five weeks went pretty fast.
What Changed, and When
Before HSCT
Reported after treatment
Left leg swung outward to get it forward
Left leg travels straight forward, with no swing and no trick
Walking with a crutch or using a wheelchair
A difference already felt in walking and in bending her knee before she left
A 100 metre walk to the supermarket was too far
Working with a physiotherapist at home to rebuild muscle strength
Health going downhill fast for two years
In her own description, feeling so good
Linda calls the change in her left leg a very good base from which to take real steps again.
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.
“I was born in India, and when I was three months I got adopted to Holland. It feels like getting back to where I once began, to get a new second chance.”
“It felt like I could be in charge of my own life again, do something, instead of just overcoming the MS.”
“The nurses who stood by me when I had to throw up would put their hands over my back and they would stay with me, and let me really feel that I would not be alone.”
“Actually it’s a high quality treatment and it’s a really good treatment, and they really know what they’re doing. I think they are the experts in this treatment, and we felt safe.”
Her friend, who stayed with her as her attendant for the five weeks, adds that Linda already feels a difference in walking and in bending her knee, and that a few more months will show the full result.
Linda’s Video Testimonial
Transcript, lightly edited for clarity
Linda: I’m Linda and I’m from Holland. I’m 36 years old and I’m now here in India because I got, in 2007, the diagnosis MS. And the last two years, I think it went really fast downhill. So that was when I decided to explore stem cell transplant.
And by exploring I came to India. And the fact that I saw it was in India, and in New Delhi, made it also really special to me, because I was born in India and when I was three months I got adopted to Holland. And it feels like getting back to where I once began, to get a new second chance. So it’s really special to do this here.
The reason why I decided to explore the stem cell transplant is because the MS has really got a big influence in my life. I needed to stop work. I couldn’t make some moves, like open bottles. And it really influenced my life, my daily life, and doing stuff wasn’t that normal anymore. It went with a plan. Normal walking became with a crutch or a wheelchair.
And thinking about what else could become, made me really scared. Now I had a little bit of independency, but at a rate I was going down. It was really scary to think about how fast even that would disappear.
So that’s why I really hoped they would accept me for the treatment. So when they did, I got the email, I was really, really happy, because it felt like I could be in charge of my own life again, do something, instead of just overcoming the MS.
On the 20th of March I came here, and it was mind blowing. It was really different than I would have expected. We came in the night so it was really strange coming in. But I think really quickly, a few days after, seeing many nurses but also talking to the doctors, the trust just really came and I really felt in good hands.
The doctors are really explaining everything with much patience, and even if I ask a question they already answered a day ago, they will do it again. Also with the treatment they can explain everything. If there’s a new phase they can tell me, this is going to happen Linda, and this is going to happen, and this is going to happen. And when I’m in that phase, then you see everything happen, but then in my mind I have the voice of the doctor. Oh, it’s okay, it’s okay, they are prepared and they know. I really feel I was in really good hands. They really took care of me all the time.
So I’m here with my friend as an attendant, and we experienced the last five weeks as, it was a difficult treatment, but we felt very welcome and the service was really good. So when you press the alarm the nurses come very quickly to help, and when there is an emergency or we really need help, then they’re there so quickly. And it’s really nice to see that they really cooperate, they work really good together. And with the whole team, all the nurses, they were really caring, really sweet, really personal, even involved I think. So I’m really happy that they were persons with me in this whole process.
The most impressive thing about this whole process, this whole treatment, is the care I felt. The nurses who stood by me when I had to throw up, they would put their hands over my back and they would stay with me, and let me really feel that I would not be alone. They were with me through all of it and they really know what they’re doing. So that’s really nice to experience. It gives faith, because sometimes you can be scared in a difficult treatment like this, especially if you are the person that gets the treatment. And it’s really nice to get the confidence from the nurses and also from the doctors. They come two times a day, in the morning and in the evening, and you really feel like they know how you’re doing and if anything is needed. And they’re also really funny, because it’s a serious treatment, so it’s nice to also talk and make jokes.
And on the other side, you’re just in a room for five weeks, and the service is really good, so you have a TV, you have the internet. And yeah, the five weeks actually went pretty fast, and it was a good experience.
And I can imagine, if you come from a different country and you’re thinking about the treatment, going to India, you can have doubts, maybe because of the country, or hygiene, or whatever. Actually it’s a high quality treatment and it’s a really good treatment, and they really know what they’re doing. I think they are the experts in this treatment, and we felt safe.
Her friend and attendant: And to say, she actually already feels a difference with walking, with bending her knee. And we know we need a few more months before we can really say what is the real result, but we are already really happy.
Linda’s Story in the Dutch Press
Linda also gave a full interview to the Dutch press about her treatment. It is reproduced below in Dutch, as it was published.
Linda onderging stamceltherapie in India om MS te stoppen: ‘Ik heb goede hoop dat het nu beter gaat’
“Mijn woonkamer is mijn leefruimte, daar zit ik in quarantaine. Maar dat is niet erg, ik voel me zo ontzettend goed”, vertelt Linda. Op 2 april kreeg ze haar stamcellen terug. “Dat zie ik als mijn verjaardag. De artsen in India vertelden dat ik nu het lichaam van een baby heb. Ik moet weer helemaal vanaf nul beginnen.”
De behandeling is heftig geweest, vooral de chemotherapie. “Gelukkig was mijn beste vriendin Leoni erbij. Zij was mijn steun en toeverlaat en kon goed aanvoelen wat ik nodig had. Het was een veilig gevoel dat zij erbij was.”
Stamceltherapie in India is Linda’s Linda’s laatste hoop om MS te stoppen: ‘De kans bestaate dat ik dat niet overleef’
Verlammingsverschijnselen
Bij MS, multiple sclerose, worden signalen tussen de hersenen en de spieren niet goed doorgegeven via de zenuwen, waardoor verlammings- en uitvalsverschijnselen optreden.
Linda ontdekte in 2007 dat ze de ziekte had, ze was toen 24. Ze ging naar de huisarts omdat ze weleens dubbel zag. Twee jaar geleden ging haar gezondheid hard achteruit. De supermarkt 100 meter verderop was al te ver om te lopen.
‘Ik moet opnieuw leren lopen’
Of de behandeling is aangeslagen, weet ze nog niet. “Ik moet nu trainen met hulp van een fysiotherapeut. Zo krijg ik mijn spierkracht terug. De afgelopen jaren liep ik door de MS slecht.”
Nu kan haar linkerbeen weer recht vooruit. “Geen zwaai of andere trucjes om hem naar voren te krijgen. Dit is voor mij een hele mooie basis om weer echt normale stappen te kunnen zetten.”
Goede hoop
Artsen gebruiken een EDSS-score van 1 tot en met 10 om de zwaarte van de MS te meten. Voor de behandeling zat Linda op een 5,5/6. “Als ik functies terugkrijg, gaat mijn score naar beneden. Dit meet je door te kijken wat ik voorheen niet kon en nu wel. Naar de supermarkt lopen bijvoorbeeld.”
Ook krijgt Linda MRI’s om te zien of activiteit van MS uitblijft. “Of er nog meer verbetering gaat komen, moet ik in het dagelijks leven gaan ervaren. Dat kan tot nog twee jaar na de behandeling gebeuren. Maar ik voel me zo goed, ik heb goede hoop.”
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.
