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I wrote a paper in grade 9 titled "How Stem Cells Impact my Life". It was for a contest held by Partners in Research. The goal was to write a paper about a new medical advancement that would impact your life. I wrote about how stem cells would one day help my Mom and Nini (grandmother) with their autoimmune illnesses - rheumatoid arthritis, lupus, and ulcerative colitis.
Little did I know, stem cells would have a much, much, larger impact on my life.
My Mom and I are travelling to India on February 2nd, 2017, to have her receive a Hematapoietic Stem Cell Transplant (HSCT). I will be her medical attendant for the journey.
For those who aren't sure what the procedure is all about, there's a separate post explaining it in more depth here: http://www.hsctstopsms.com/how-hsct-works/
Basically, the patient has their immune system "reset" by the therapy, removing the 'memory' of MS from the cells.
It starts with prepping the body for the transplant, "stem cell mobilization". In this stage your stem cells are mobilized into your blood stream.
Once your body is ready, they take your blood out and put it through a machine that separates the stem cells floating in your blood from the rest of it, and then the blood flows back into you.
After this, you are given chemotherapy, which is meant to destroy, or "ablate" your immune system up to 90%. After receiving ATG or another agent to further eliminate rogue T-cells (other bits of your immune system), your stem cells are transplanted back into your body. This helps you recover from the chemotherapy and reduces the risk of mortality from the treatment, to begin re-building your immune system.
After monitoring your system to ensure 'engraftment' has taken place and your immune system is being re-built, you're released from the facility and spend the following year building your immune system back up.
Multiple sclerosis is an auto-immune disease where your body's immune cells attack the protective covering on the nerves in your brain and spinal cord, causing the signals between neurons to be inable to communicate with neurons around them.
When your immune system is wiped out and is "re-programmed" to work properly by the stem cells, your body has a chance to attempt to reduce the damage incurred by the previous immune system.
Here are some articles I've attached that discuss the procedure of various HSCT trials and their successes:
http://www.healthline.com/health-news/stem-cell-transplants-first-ms-treatment-reverses-disability-012215
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/
It is important to note that while this treatment does not always work 100% of the time, your chance of recovering from MS is greater the lower your EDSS score is. EDSS stands for Expanded Disability Status Scale, and is used for determining how disabled someone is with MS.
The scale goes from 0 to 10, 0 being no neurological impairment, and 10 being death. My Mom is currently at a 3.0, but has been worsening by the month over the last year. Her type of MS is RRMS, Relapsing-Remitting Multiple Sclerosis. She has relapses where she sometimes cannot leave her bed, cannot do anything independently, and loses most of her ability to speak. When she recovers from these relapses, she never fully recovers to what she was before.
When none of the standard MS medications were working for her (they didn't slow progression of the disease), we looked into other options. When we discovered HSCT, we attempted to have my Mom take part in a clinical study ran by Dr. Mark Freedman in Ottawa, Ontario, Canada. We were told that my Mom was not disabled enough for the treatment (despite it being widely recognized in the medical field that it is extremely important to have it done early in the disease) and that she had not exhausted her medical options. All of the previous treatments had made her too ill to leave bed due to vomiting, or did not work at all. This was her only hope at returning to normal life.
We found an online community full of information, various Facebook groups, and lots of support.
Believe it or not, most neurologists do not recognize HSCT as a reliable form of treatment or therapy for MS patients. Canada has the highest rate of MS in the world, yet they continually deny the success of the therapy. They believe it is "too high risk, too unpredictable, and won't recommend it" to the majority of their patients.
I was told by a medical researcher that "HSCT is a treatment that is too high risk, we do not know what stem cells will do to the body. You're putting something foreign into your body and we have no idea what it will do. We don't know if stem cells cause cancer, or if you could die from it".
Personally, I thought this was rather ironic of this researcher to say, as if the expensive lab-produced medicines were not risky foreign substances with unknown effects. With extreme side effects such as nausea, vomiting, and even rare brain diseases forming, many MS patients find these treatments intollerable. Many people decline even faster after going off of an MS medication that did not work for them.
My Mom has always been a risk-taker. The mortality rate of HSCT is around 1% with the current protocol - they have lessened the extremity of the chemotherapy given, making it non-myeloblative rather than myeloblative.
In her own words, she "would rather die trying, than die not trying".
This may sound extreme to some, but when you've lost your career, cannot brush your own hair anymore, can barely speak or walk, and start to forget your own age & your daughter's birth date - HSCT seems like a pretty good deal.
India, here we come!
Little did I know, stem cells would have a much, much, larger impact on my life.
My Mom and I are travelling to India on February 2nd, 2017, to have her receive a Hematapoietic Stem Cell Transplant (HSCT). I will be her medical attendant for the journey.
For those who aren't sure what the procedure is all about, there's a separate post explaining it in more depth here: http://www.hsctstopsms.com/how-hsct-works/
Basically, the patient has their immune system "reset" by the therapy, removing the 'memory' of MS from the cells.
It starts with prepping the body for the transplant, "stem cell mobilization". In this stage your stem cells are mobilized into your blood stream.
Once your body is ready, they take your blood out and put it through a machine that separates the stem cells floating in your blood from the rest of it, and then the blood flows back into you.
After this, you are given chemotherapy, which is meant to destroy, or "ablate" your immune system up to 90%. After receiving ATG or another agent to further eliminate rogue T-cells (other bits of your immune system), your stem cells are transplanted back into your body. This helps you recover from the chemotherapy and reduces the risk of mortality from the treatment, to begin re-building your immune system.
After monitoring your system to ensure 'engraftment' has taken place and your immune system is being re-built, you're released from the facility and spend the following year building your immune system back up.
Multiple sclerosis is an auto-immune disease where your body's immune cells attack the protective covering on the nerves in your brain and spinal cord, causing the signals between neurons to be inable to communicate with neurons around them.
When your immune system is wiped out and is "re-programmed" to work properly by the stem cells, your body has a chance to attempt to reduce the damage incurred by the previous immune system.
Here are some articles I've attached that discuss the procedure of various HSCT trials and their successes:
http://www.healthline.com/health-news/stem-cell-transplants-first-ms-treatment-reverses-disability-012215
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/
It is important to note that while this treatment does not always work 100% of the time, your chance of recovering from MS is greater the lower your EDSS score is. EDSS stands for Expanded Disability Status Scale, and is used for determining how disabled someone is with MS.
The scale goes from 0 to 10, 0 being no neurological impairment, and 10 being death. My Mom is currently at a 3.0, but has been worsening by the month over the last year. Her type of MS is RRMS, Relapsing-Remitting Multiple Sclerosis. She has relapses where she sometimes cannot leave her bed, cannot do anything independently, and loses most of her ability to speak. When she recovers from these relapses, she never fully recovers to what she was before.
When none of the standard MS medications were working for her (they didn't slow progression of the disease), we looked into other options. When we discovered HSCT, we attempted to have my Mom take part in a clinical study ran by Dr. Mark Freedman in Ottawa, Ontario, Canada. We were told that my Mom was not disabled enough for the treatment (despite it being widely recognized in the medical field that it is extremely important to have it done early in the disease) and that she had not exhausted her medical options. All of the previous treatments had made her too ill to leave bed due to vomiting, or did not work at all. This was her only hope at returning to normal life.
We found an online community full of information, various Facebook groups, and lots of support.
Believe it or not, most neurologists do not recognize HSCT as a reliable form of treatment or therapy for MS patients. Canada has the highest rate of MS in the world, yet they continually deny the success of the therapy. They believe it is "too high risk, too unpredictable, and won't recommend it" to the majority of their patients.
I was told by a medical researcher that "HSCT is a treatment that is too high risk, we do not know what stem cells will do to the body. You're putting something foreign into your body and we have no idea what it will do. We don't know if stem cells cause cancer, or if you could die from it".
Personally, I thought this was rather ironic of this researcher to say, as if the expensive lab-produced medicines were not risky foreign substances with unknown effects. With extreme side effects such as nausea, vomiting, and even rare brain diseases forming, many MS patients find these treatments intollerable. Many people decline even faster after going off of an MS medication that did not work for them.
My Mom has always been a risk-taker. The mortality rate of HSCT is around 1% with the current protocol - they have lessened the extremity of the chemotherapy given, making it non-myeloblative rather than myeloblative.
In her own words, she "would rather die trying, than die not trying".
This may sound extreme to some, but when you've lost your career, cannot brush your own hair anymore, can barely speak or walk, and start to forget your own age & your daughter's birth date - HSCT seems like a pretty good deal.
India, here we come!
