Evert travelled from Canada to HSCT Hospital India for HSCT for myasthenia gravis. He arrived with a drooping eyelid, worse on the left, weakness in both hands and in his forearm, a weak left calf, and difficulty breathing.
By the time he filmed this, his hand strength and calf strength were both very good, and he had no problem breathing and needed no oxygen.
His cousin travelled with him as his attendant and stayed for the month. She describes herself as an impartial observer, and she gives her own account of what she watched happen.
Evert is one of the patients treated at HSCT Hospital India, where more than 1500 MS patients have already been treated. Eligibility for myasthenia gravis is set out in the HSCT for myasthenia gravis guide.
Evert: HSCT for Myasthenia Gravis Results at a Glance
Patient
Evert, Canada
Condition
Myasthenia gravis
Treatment
Autologous HSCT at HSCT Hospital India, New Delhi
Time in hospital
One month, with his cousin beside him as attendant
Symptoms before
Drooping eyelid, worse on the left. Both hands weak, weak forearm, weak left calf, difficulty breathing
First response
His eyes responded during the early stages of conditioning chemotherapy
Hand and calf strength after
Very good, in his own assessment
Breathing after
No problem breathing. No oxygen needed.
In his words
“Since that time I’ve improved dramatically.”
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.
Evert is from Canada. He came to HSCT Hospital India in New Delhi for haematopoietic stem cell transplantation, the procedure usually written as HSCT, because of his myasthenia gravis.
Myasthenia gravis is a long term neuromuscular condition in which the signal between nerve and muscle is disrupted, producing muscle weakness that varies through the day. It commonly affects the eyes, the face and swallowing, and can affect breathing.
He asked his cousin to come with him for the month as his attendant. She found the arrangement very interesting, because Canada does not use patient attendants, and she describes it as a good idea for the psychological support it gives.
Life Before HSCT
Evert lists his own symptoms plainly. Weakness in his left hand. Weakness in his forearm. A drooping eyelid, especially on the left side. A weak calf on the left side. Both hands weak.
He adds one more, and he adds it as an afterthought on camera rather than as a headline. He was having difficulty breathing.
He is also clear about why he was looking beyond conventional treatment. He describes conventional treatment as making him very sick, and says it was leaving him with poor quality of life day to day. That is the thing he came to get rid of.
What Was Done
Evert received autologous non myeloablative HSCT. Autologous means his 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 Evert reports
1. Mobilisation
Growth factor medication moves stem cells out of the bone marrow into the bloodstream.
Not described separately on camera. He says he is inquisitive and asked a lot of questions.
2. Harvest (Leukapheresis)
Blood passes through a machine that separates and stores the stem cells, then returns the blood.
He describes the harvesting of his stem cells as the first technical step of the treatment.
3. Conditioning
Chemotherapy clears the misdirected immune system.
Hard on him. Allergies to some medications, managed by his doctors. His eyes started responding during this stage even while he felt at his worst.
4. Reinfusion
His own stored stem cells go back in and rebuild the immune system.
Engraftment syndrome, which the doctors treated. He says that with their expert care he got over those things and improved every day afterwards.
The difficulties Evert ran into during chemotherapy and engraftment were managed on the ward by his own medical team. He says so himself: with the doctor’s expert care he got over those things.
What Changed, and When
Evert reports his results symptom by symptom rather than as a single verdict, and he includes the one that has not run in a straight line.
Symptom
Before HSCT
By the end of his stay
Breathing
Difficulty breathing
No problem breathing. No oxygen needed.
Hands
Both hands weak, left hand worst
Hand strength very good
Left calf
Weak
Calf strength very good
Eyelid
Drooping, worse on the left
Responded very quickly in early chemotherapy, with a setback since
His cousin, who saw him at the start and at the end, says the benefits became clearest in the final week. She describes recognising elements of the person he was before myasthenia gravis, and says she was close to tears seeing it.
HSCT Hospital India treats myasthenia gravis alongside multiple sclerosis, CIDP, scleroderma and other autoimmune conditions. 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.
Evert’s cousin came for the month as his attendant. Their mothers were sisters. She is direct about the fact that her experience of the stay was completely different from his, and she puts her own account on the record as an observer rather than as a patient.
She says she was impressed with the knowledge of the doctors and impressed with his treatment. She was able to help with practical things as well as being there for him. She notes that Canada does not use patient attendants, and that in New Delhi they are provided for local patients as well as international ones. She thinks the psychological support the arrangement provides is a good idea.
She does not skip the hard part. She says he went through some rough times, with no doubt about it. She then describes the final week, when she saw elements of the person he had been before the condition took hold.
In Evert’s Own Words
“After going through even the beginning stages of chemo my eyes responded very quickly, even though I was feeling very horrible at the time. My eyes started to respond. Since that time I’ve improved dramatically.”
“My breathing has responded very well. I have no problem breathing anymore. I need no oxygen.”
“With the doctor’s expert care I got over those things. Every day now I’m feeling much better.”
“Not sure yet where this is all going to end up, but the prognosis looks very good that my myasthenia gravis will go into total remission… I think that this has been the treatment of choice.”
Evert’s Video Testimonial
Transcript, lightly edited for clarity
Evert: Hi, my name is Evert, I’m from Canada. I came to hospital because of my myasthenia gravis. I came for HSCT treatment. They put me through the HSCT process to get rid of, hopefully, some of my symptoms.
My symptoms included weakness in my left hand, weakness in my forearm, drooping eyelid especially on the left side, a weak calf on the left side. Both my hands were weak.
After going through even the beginning stages of chemo my eyes responded very quickly, even though I was feeling very horrible at the time. My eyes started to respond. Since that time I’ve improved dramatically. My eyes have had a bit of a setback, but my hand strength is very good now, my calf strength is very good.
One thing I didn’t mention, I was having difficulty breathing. My breathing has responded very well. I have no problem breathing anymore. I need no oxygen.
His cousin and attendant: I am Evert’s cousin. Our mothers, they’re both passed away, but they were sisters, and Evert asked me to come and join him for this month, to be his attendant. And I thought it was very interesting that in Canada they don’t have patient attendants. I was wondering, I thought it might be only for the international patients, but it’s actually for the local patients as well. And I think it’s a great idea to provide psychological support, and I was able to help with some physical things as well.
And of course the experience was way different for me than it was for Evert, but I was really impressed with the knowledge of the doctors. I was impressed with his treatment. And of course, being an impartial observer, I’ve been able to see the development of his condition from when we first came to when he left.
Evert: The technical part of the treatment, I’m very inquisitive, so I asked a lot of questions. It went from harvesting my stem cells, and then also the chemotherapy. I must admit that this was very hard on me. I had some difficulty with allergies with medications and some problems with engraftment syndrome. Since that time, with the doctor’s expert care, I got over those things. Every day now I’m feeling much better and looking very much forward to going home in a few days.
His cousin and attendant: And I think it’s really in this final week that we really start to see the benefits of the treatment here. And he did go through some rough times, no doubt about it, but the other day I was close to tears, just seeing what I saw as the old Evert, seeing before he had his myasthenia, and I saw elements of that. And of course he has no hair now, usually he has a big beard, but when that comes back, you know, I’m really thankful for the treatment that he’s had here.
And for me it’s been a wonderful experience. I’ve loved talking with the staff. I’ve enjoyed the food, the butter chicken. I’m going to have to find an Indian restaurant when I get home so that I can get the butter chicken. For me it’s been an enjoyable experience, and I’m very thankful for the treatment that my cousin has had, and thankful for the personal interactions that we’ve had with the staff here as well.
Evert: Not sure yet where this is all going to end up, but the prognosis looks very good that my myasthenia gravis will go into total remission. And I highly recommend that people look into this as a treatment for the myasthenia gravis, if conventional treatments don’t work. Or then again, even if conventional treatments work but are not working for you as far as illness and just daily poor quality of life. I was looking for this to get rid of those aspects of conventional treatment which weren’t working for me and were making me very sick. I think that this has been the treatment of choice.
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.
