Dean arrived at HSCT Hospital India unable to walk without support. After the transplant his clinician reports that he walks without support and can climb stairs. He is from the United Kingdom, he was 51 when he recorded this video, and he had been living with stiff person syndrome for about a year before treatment.
Stiff person syndrome is a rare neurological condition with features of an autoimmune disease. It causes muscle rigidity and painful spasms that make walking and ordinary daily activity progressively harder. Dean travelled to HSCT Hospital India with his wife Mandy as his attendant and the two of them stayed for thirty days. Autologous haematopoietic stem cell transplantation, known as HSCT, uses a patient’s own stem cells to rebuild the immune system after the misdirected immune cells are cleared.
| Dean: Stiff Person Syndrome Results at a Glance |
| Patient | Dean, United Kingdom, aged 51 when he recorded the video |
| Condition | Stiff person syndrome, diagnosed about a year before treatment |
| Treatment | Autologous HSCT at HSCT Hospital India, New Delhi |
| Attendant | His wife Mandy, who stayed with him for the full thirty days |
| Time in hospital | Thirty days, in a deluxe private room with triple level HEPA air filtration |
| Walking on arrival | Mandy says he arrived in a wheelchair and could not walk two steps. His clinician says he was barely able to walk without support and used a walker. |
| Walking after the transplant | His clinician says he walks without support and can climb stairs. The walking footage carries an on screen caption reading 9 weeks post stem cell transplant. |
| Reported since returning home | Back at work, walking and jogging independently |
Stiff person syndrome before the transplant
A year after diagnosis Dean could no longer manage simple daily activities and walking had become extremely difficult. Mandy describes the period after diagnosis in her own words: the condition was one neither of them had heard of, and what they found when they searched for it was frightening.
‘It completely changed our life for the worse. We didn’t know what we were going to do. We’ve never heard of it before. We didn’t know what treatment, if any. Everything we found on the internet was not good, and it was frightening.’
Mandy
Mandy calls the moment they first heard about the stem cell transplant the first start of light. The research came after that, and it led them to this hospital. They travelled from the United Kingdom to New Delhi together.
Walking before and after
| What changed | On arrival in Delhi | After the transplant |
| Walking unaided | Mandy: could not walk two steps | Clinician: walking without support |
| Walking aid | Mandy: a wheelchair on arrival. Clinician: a walker. | Clinician: none |
| Stairs | Not stated by either speaker | Clinician: able to climb stairs |
| Work | Simple daily activities extremely difficult | Back at work after returning home |
Dean’s clinician sets out the comparison in the video: barely able to walk without any support and using a walker before the procedure, walking without support and able to climb stairs afterwards. The walking footage that follows carries an on screen caption reading 9 weeks post stem cell transplant. The clinician does not state an interval himself.
Families reading a case like this usually want to know whether the same treatment applies to their own. An HSCT case manager will look at the diagnosis and current level of function and give a free opinion, with no cost and no obligation.
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What Dean and Mandy say about the hospital
Mandy tells other families from the United Kingdom not to be afraid of travelling, and says the hospital does not feel like a foreign country because everybody speaks English. What she returns to at greater length is how the doctors communicated.
‘They talk to us, they tell us everything. We’ve never heard that before. They explain every tablet, every part of the procedure. If you’ve got a side effect they’re on it. They don’t want you to suffer, and they talk to you like they really do care.’
Mandy
Dean and Mandy stayed together in a deluxe room with triple level HEPA air filtration for the full thirty days.
HSCT for stiff person syndrome
Stiff person syndrome is rare, so every case is assessed individually before a decision is made. HSCT Hospital India evaluates each patient’s records, diagnosis and current level of function first, and then decides whether the treatment is appropriate. The full clinical picture for this condition is set out in the HSCT for stiff person syndrome treatment guide, and the acceptance criteria are listed on the HSCT eligibility criteria page.
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, and the hospital now treats stiff person syndrome, systemic sclerosis, CIDP, lupus, lupus nephritis and small fibre neuropathy as well. Treatment is a single thirty day stay at one all inclusive price of 30,000 US dollars, in a deluxe private room with triple level HEPA air filtration. There is no long waiting list.
Patients and families anywhere in the world can ask for 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.
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Transcript of the video
The words below are the speakers’ own, punctuated for reading and with repeated words removed. Nobody is named on camera except Dean, so each speaker is identified by what they say. Dean’s surname has been left off this page.
Dean: Hello, my name is Dean. I’m 51 and last year I was diagnosed with stiff person syndrome.
Mandy: My husband was diagnosed with stiff person syndrome. It’s a rare neurological autoimmune disease and it completely changed our life for the worse. We didn’t know what we were going to do. We’ve never heard of it before. We didn’t know what treatment, if any. Everything we found on the internet was not good and it was frightening. And then we heard about the stem cell transplant. That was the first start of light. We then got on the internet, did our research, found this hospital, and I want to tell everyone. We’re from the UK if you hadn’t guessed. Do not be afraid. You don’t even feel like you’re in a foreign land because everybody not only speaks English, we’re lucky, they care. And I do need to say this. When Dean arrived here in a wheelchair he couldn’t walk two steps. You’ll see him in a minute, and that’s just the start. But more important than that, I also want to say for the doctors, they talk to us, they tell us everything. We’ve never heard that before. They explain every tablet, every part of the procedure. If you’ve got a side effect they’re on it. They don’t want you to suffer, and they talk to you like they really do care, and we’ve not had that before. So as far as we’re concerned, if I speak to both of us, this has been the best investment we’ve ever made in our lives …
Clinician: So when he came to us, before the transplant procedure was started, he was barely able to walk without any support, so he used to take walker. And after the transplant procedure, so when he went back, and now he is able to walk without support. Even he can climb stairs …
On screen caption over the walking footage: 9 weeks post stem cell transplant.
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