Five months after his transplant, about 95 per cent of his symptoms were gone. He was off prednisone, exercising every day, and back at work as a police officer.
| Dylan: HSCT for Autoimmune Small Fibre Neuropathy Results at a Glance |
| Patient | Dylan, South Jersey, United States, aged 28 when he recorded this account |
| Condition | Autoimmune small fibre neuropathy. He says he suffered from it his entire life, and that the pain changed the trajectory of his life at 20 |
| Treatment | Autologous HSCT at HSCT Hospital India, New Delhi |
| Before treatment | Unstoppable burning pain, chest pain he could not explain, fight or flight sensations, gastrointestinal issues, waking gasping for air, unable to work or work out |
| Medication before | Prednisone at 40 mg, in his words just to sustain him |
| At five months | About 95 per cent of symptoms gone, off prednisone, working out every single day, back at work as a police officer |
| In his own words | "I feel infinitely better than I did before." |
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.
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Who Dylan Is
Dylan is a police officer from South Jersey in the United States. He was 28 when he recorded this account, five months after travelling to New Delhi for autologous haematopoietic stem cell transplantation, the procedure usually written as HSCT.
He says he suffered from small fibre neuropathy his entire life, with weird symptoms he could not explain, and that the nerve pain completely changed the trajectory of his life at 20 years old.
His name has been changed to protect his privacy. Everything else here is his own, in his own words.
Life Before HSCT
The pain is what he describes first. Unstoppable burning pain that he calls catastrophic to his life, alongside chest pain he could not explain, fight or flight sensations and gastrointestinal issues.
Sleep had gone with it. He says he could barely sleep and would wake up gasping for air. So had exercise, and so had his job: policing was a job he had on hold for the last year because he could not maintain function, and with the chest pains it was impossible to maintain a stable life and job while dealing with the disease.
He was taking prednisone at 40 mg, which in his own account was what it took just to sustain him.
Why He Chose HSCT Hospital India
He did extensive research at different autologous HSCT facilities before deciding, and chose India.
What he describes as the difference is being understood. In his words the doctors there were "super kind, super intelligent", and knew more about his condition than a lot of doctors in the United States did. He calls it refreshing to talk to doctors who understood what he was going through.
He also believed his was an unusual case to take on, and he says so himself rather than being told it:
"I don’t think this has ever been done for small fiber neuropathy or autoimmune small fiber neuropathy. So I’m super appreciative that they took the chance and afforded me this opportunity to get this treatment done."
That is his own belief at the time he recorded it, not an established first. Small fibre neuropathy now sits among the autoimmune conditions treated at HSCT Hospital India, and it has its own eligibility guide.
What Was Done
Autologous HSCT uses a patient’s own blood forming stem cells. It is intended to clear the misdirected immune system and rebuild a new one from cells collected beforehand. It runs in four stages across a 30 day stay.
| Stage | What it involves |
| Mobilisation | Blood forming stem cells are brought out of the bone marrow and into the bloodstream so they can be collected. |
| Harvest (Leukapheresis) | The stem cells are collected from the blood and set aside for the reinfusion. |
| Conditioning | The misdirected immune system is cleared. The stay is spent in a deluxe private room with triple level HEPA air filtration. |
| Reinfusion | The collected cells are returned so a new immune system can rebuild. |
Dylan does not describe the stages individually in his account, so nothing in this table is attributed to him. It sets out what the treatment he received involves.
What Changed, and When
He recorded his account five months after the transplant. Everything in the right hand column is what he reports at that point, and nothing is added to it.
| Before HSCT | Reported five months after treatment |
| Unstoppable burning pain he calls catastrophic to his life | About 95 per cent of his symptoms gone |
| Prednisone at 40 mg, in his words just to sustain him | Off prednisone |
| Could not work out | Working out every single day |
| Policing on hold for the last year, unable to maintain function | Back at work as a police officer |
He mentions two more things without being asked. His hair is coming back, and in his words everything is falling back into place. He does not describe his sleep, so nothing is claimed about it here.
He does not present this as finished. He says he hopes to continue getting better as time goes on, and that is where his account stops.
A world class team of HSCT specialists will read a case and say whether HSCT is suitable, and what it would and would not be expected to achieve. There is no cost and no obligation, and an HSCT case manager answers personally.
Get Free Expert Opinion Now
In Dylan’s Own Words
"I had unbearable nerve pain that completely changed the trajectory of my life at 20 years old."
"The doctors there were super kind, super intelligent, knew more about my condition there than a lot of doctors in the United States did. It was super refreshing talking to doctors who understood what I was going through."
"And I’m grateful that Dr Rahul and his team took the opportunity to take on a case like mine."
"I’m now five months since my transplant and 95 per cent of my symptoms are gone. I feel infinitely better than I did before."
"And as you can see, I’m back to work as a police officer. You know, that was a job I had on hold for the last year that I couldn’t maintain function."
"My hair is coming back. You know, everything’s falling back into place. And I am super grateful for Dr Rahul and his team at the hospital in New Delhi, India."
"I would recommend this treatment for anybody who has autoimmune small fiber neuropathy. It was a success for me, and I hope that one day this treatment is standardized so everybody can get this."
HSCT for Small Fibre Neuropathy
Small fibre neuropathy is one of the autoimmune conditions treated at HSCT Hospital India, alongside multiple sclerosis, stiff person syndrome, systemic sclerosis, CIDP, lupus and lupus nephritis and myasthenia gravis. Eligibility is set out in the HSCT for small fibre neuropathy guide.
Dylan’s Video Testimonial, in Full
Transcript, lightly edited for clarity
Hi, my name is Dylan. I’m 28 years old. I am from South Jersey, United States. I suffered from small fiber neuropathy my entire life. I had weird symptoms that I couldn’t explain. I had chest pain I couldn’t explain, fight or flight sensations, gastrointestinal issues, and then up until recently had unstoppable burning pain that was catastrophic to my life.
I couldn’t do a lot of things I used to do. I couldn’t work out. I could barely sleep. I’d wake up gasping for air. And like I said, I had unbearable nerve pain that completely changed the trajectory of my life at 20 years old.
After doing extensive research at different AHSCT facilities, I decided to go to India. I’m super grateful for the experience. I have been doing infinitely better since I’ve gotten this treatment done. The doctors there were super kind, super intelligent, knew more about my condition there than a lot of doctors in the United States did. It was super refreshing talking to doctors who understood what I was going through. And I’m grateful that Dr Rahul and his team took the opportunity to take on a case like mine.
I don’t think this has ever been done for small fiber neuropathy or autoimmune small fiber neuropathy. So I’m super appreciative that they took the chance and afforded me this opportunity to get this treatment done.
I’m now five months since my transplant and 95 per cent of my symptoms are gone. I feel infinitely better than I did before. I’m off the prednisone that I was on. I had to be on 40 mg just to sustain me. I’m working out every single day. I’ve lost at this point 35 lbs. Need to lose another 15 more to get back to my weight I was previously. And as you can see, I’m back to work as a police officer. You know, that was a job I had on hold for the last year that I couldn’t maintain function. As I would have the chest pains, it was impossible for me to maintain a stable life and job while having and dealing with this disease. My hair is coming back. You know, everything’s falling back into place. And I am super grateful for Dr Rahul and his team at the hospital in New Delhi, India.
I would recommend this treatment for anybody who has autoimmune small fiber neuropathy. It was a success for me, and I hope that one day this treatment is standardized so everybody can get this. But like I said, it worked out for me, and I’m super grateful for the team, and hopefully I continue to get better and better as time goes on. Can’t thank you guys enough.
*Name changed to protect patient’s privacy
