Johannis from the Netherlands was diagnosed with multiple sclerosis in 2012. Before his treatment at HSCT Hospital India, he could walk only a few metres with a walker. His sister Marion, who travelled with him as his attendant, says that after treatment he walks better and is a little less stiff.
Multiple sclerosis, usually shortened to MS, is a disease in which the immune system attacks myelin. Myelin is the protective coating around the nerve fibres of the brain and spinal cord. Autologous haematopoietic stem cell transplantation, known as HSCT, uses the patient’s own blood forming stem cells to rebuild that immune system. Before those stem cells are returned, chemotherapy clears out the faulty immune cells. Johannis had this treatment at HSCT Hospital India and recorded this video with Marion a few days before they flew home.
| Johannis from the Netherlands: HSCT for MS Results at a Glance |
| Patient | Johannis is from the Netherlands. |
| Condition | He was diagnosed with multiple sclerosis in 2012. |
| Treatment | He had autologous HSCT at HSCT Hospital India in New Delhi. |
| Attendant | His sister Marion travelled with him as his attendant. |
| Walking before treatment | Marion says he could walk only a few metres, using a walker. |
| Walking after treatment | Marion says he was weak from the chemotherapy at first, and that after that he walks better and is a little less stiff. |
| How they found the hospital | They found HSCT Hospital India through a Dutch MS website that lists hospitals offering stem cell transplants. |
| Recorded | The video was recorded in hospital, a few days before Johannis was due to fly home. |
| Package price today | One all inclusive price of 30,000 US dollars covers a stay of up to thirty days. |
How Johannis and Marion found HSCT Hospital India
Marion says several years passed after his diagnosis before they decided on a stem cell transplant. At the time, she says, they could not get it for Johannis in the Netherlands, so they looked for a country that offered it. A Dutch MS website, whose name she translates as Stronger than MS, listed hospitals that carry out stem cell transplants.
"We saw India and it looked very good, so we contacted India and we decided to come here."
Marion, Johannis’s sister and attendant
The position at home has since changed. HSCT for very active relapsing remitting MS has been covered by Dutch basic health insurance, the basisverzekering, since December 2022. Thirteen people had received it at the time our HSCT for MS in the Netherlands page was written. That page sets out what the Dutch criteria test and how an assessment in India compares.
Johannis and Marion contacted the hospital after reading about it online. If you are at that stage, the hospital will email you the details every patient starts with. They cover the treatment, the thirty day stay and everything the one price includes.
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What happened when Johannis arrived at HSCT Hospital India
Johannis and Marion reached the hospital in the middle of the night. The next morning a doctor met them and explained the treatment, and Marion says it went very well.
"The treatment was good, quick, good, adequate. And the treatment went very well."
Marion, Johannis’s sister and attendant
Treatment at HSCT Hospital India runs in four stages within a single stay in hospital. Mobilisation comes first, when a short course of chemotherapy and a growth factor bring stem cells out of the bone marrow and into the bloodstream. The harvest follows, which doctors call leukapheresis. The stem cells are collected from the blood through a machine, a little like giving blood, and then frozen and stored.
Conditioning is the third stage. HSCT Hospital India uses the lower intensity, non-myeloablative regimen used in the MIST trial, meaning a regimen that suppresses the bone marrow without destroying it. Reinfusion is the fourth stage, when the stored stem cells are returned to the bloodstream to rebuild the immune system. The whole sequence is explained in the HSCT for multiple sclerosis guide.
How Johannis was walking by the end of treatment
Marion describes his walking before and after, and she is exact about the order of events. The chemotherapy left him weak first, and the improvement came after that.
"Before a treatment he could not walk, only some metres with the walker. And after treatment, first he was weak because of the chemo, but after that he can walk better, and he is a little bit less stiff."
Marion, Johannis’s sister and attendant
Weakness after conditioning is expected, because the chemotherapy lowers the body’s blood counts and defences for a time. For this reason every patient stays in hospital for the whole treatment, in a deluxe private room with triple level HEPA air filtration. That filtration uses fine filters to take dust and germs out of the air. Nursing care and monitoring continue around the clock. Neuro physiotherapy, exercise guided by a physiotherapist to rebuild strength and movement, is included in the package.
Patients with MS can ask whether HSCT suits their own case. HSCT specialist doctors at HSCT Hospital India review the details each patient sends. An HSCT case manager then replies personally, free of charge and with no obligation.
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Travelling from the Netherlands with a family member as attendant
Marion came with her brother as his attendant. An attendant shares the patient’s deluxe private room for the whole stay, so the family member is close by through every stage of treatment.
The attendant’s stay, food and laundry are all inside the one all inclusive price, along with airport pick-up and drop-back. They were due to fly back to the Netherlands the Friday after the video was recorded.
Travelling from the Netherlands raises practical questions about timing, the medical visa and who comes with you. A phone call is the quickest way to answer them. An HSCT case manager will call you at a time that suits you, at no cost.
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HSCT for MS patients from the Netherlands
Patients from the Netherlands start with the same free case review as every other patient at HSCT Hospital India. They fill in the online application form, and HSCT specialist doctors review it and give an initial opinion. An HSCT case manager then guides the trip, and on arrival in New Delhi a full medical evaluation confirms suitability for HSCT.
Patients come to HSCT Hospital India from more than 30 countries, and more than 1,500 people with MS have been treated in its world class facilities. Those facilities are accredited by the Joint Commission International of the USA, known as JCI-USA. They are also accredited by NABH and NABL, India’s national accreditation boards for hospitals and for laboratories. One all inclusive price of 30,000 US dollars covers a stay of up to thirty days, with no long waiting list.
Each step of the process is set out on the How It Works page. The checks behind the initial opinion are explained on the HSCT eligibility criteria page. Linda, another patient from the Netherlands, tells her own story on the Linda from the Netherlands page. Dutch readers can read about the treatment in their own language on the Stamceltransplantatie bij MS page.
Transcript of the video
Johannis: Hello, I am [name unclear]. I am from the Netherlands. I got diagnosed in 2012 [with] MS.
Marion: My name is Marion [family name unclear]. I am his sister. He had the diagnose in 2012, and it was a long journey before we decided to get some stem cell transplants, because in the Netherlands they do not do it with MS patients. So we have to look for another country they do it. And we have a website in the Netherlands, and it is called, in English, Stronger than MS. And they had all names from hospitals who do stem cell transplants, and we saw India and it looked very good, so we contacted India and we decided to come here.
Johannis: So I came to stem cell [transplantation], and I went to India via the site. I looked it up, and so I am here.
Marion: We came here in the hospital in the middle of the night, and next morning we saw Dr [name unclear], [who] explained the treatment. The treatment was good, quick, good, adequate. And the treatment went very well, and I am glad to come home next Friday. Before a treatment he could not walk, only some metres with the walker. And after treatment, first he was weak because of the chemo, but after that he can walk better, and he is a little bit less stiff. So yeah, it is good.
Patients in the Netherlands and across Europe can have their own case reviewed by the HSCT specialist doctors at HSCT Hospital India before deciding anything. An HSCT case manager answers personally, free of charge, with no obligation.
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Read next
HSCT for multiple sclerosis: the full treatment guide
HSCT for MS in the Netherlands: access, criteria and cost
HSCT eligibility criteria
Linda from the Netherlands
Rohini from Suriname
How long it takes to recover after HSCT for MS
More patient stories from HSCT Hospital India