Let's Cure Niki's MS with HSCT!!
Donation protected
My name is Niki Stevens and I'm 36 years old. I was diagnosed with Relapsing-Remmitting Multiple Sclerosis (RRMS) in 2006 (12 years ago) and I am seeking a breakthrough treatment that will help to give me my life back.
Thank you for taking the time to learn about my story!!!! (There are also links to addt'l resources on HSCT at the bottom of this page - keep reading!)
In the fall of 2006, I was enjoying a run like I did most days back then, when I noticed something wasn't right. The memory is still so vivid - I couldn't make myself run fast like I normally could. At the time, I was an avid runner and was even on the Cross Country team in college. I tried to push through the strange feeling, but in a few days I noticed I had a small limp on my right side. Figuring it was simply a pinched nerve or something small, I went to see my chiropractor and the first thing he said when he saw me was, "I need to order an MRI for you today...Niki, it looks like you might have MS."
I was terrified. I thought to myself, "I'll never get married or have children." And then I started imagining living my life from a wheelchair.
Multiple Sclerosis (MS) is a cruel and progressively debilitating disease of the central nervous system in which your body's immune system attacks itself. MS attacks your brain and your spine, specifically the protective myelin sheath that surrounds nerves. Without this protective nerve coating, the signals that your brain sends are interrupted, resulting in a host of terrible problems that can affect walking, feeling, thinking, speaking, sleeping, going to the bathroom - just about every function involved in daily life. I cannot describe the fatigue I feel from this disease in a way that a normal, healthy person could understand. But if you could imagine being too tired to even button your pants, that's how I feel from the moment I wake up until I go to bed each night.
Since 2006, I've been on 5 different drugs to treat MS. All of the drugs have one thing in common: they attempt to 'slow down' the progression of the disease. None of the drugs intend to halt the progression or improve your disability, but simply to slow it down. Over time, in my case, each relapse has made me have greater disability and I am in a critical point right now. If I don't do something soon, I know I'll lose my precious ability to walk and to be able to take care of my 2 year old son, Cooper.
A few years ago, I read an article about HSCT - Hematopoietic Stem Cell Transplant for the treatment of MS. Knowing that chemo combined with stem cells has been one of the standard treatments for cancer patients for decades, this was incredibly exciting news. I immediately called my neurologist at the time to see if I could have this treatment, and sadly, he told me that I was "too healthy" - that this aggressive approach was for patients that had advanced forms of the disease. Luckily, since then researchers have changed their minds. Now it is believed that the sooner into your diagnosis that you can have this done, the better, as it stops MS in its tracks. You do not want to wait until things get very bad and you have advanced disability - you want to stop it before permanent, crippling damage is done.
The idea behind HSCT is to essentially 'reboot' your immune system, sort of like hitting Ctrl+Alt+Delete on it. The chemotherapy completely wipes out your faulty immune system and then you are infused with healthy stem cells that have no memory whatsoever of MS. You then are able to grow a new, disease-free immune system. There have been ongoing clinical trials in the US for 10 to 15 years and the results are stunning. The studies have shown that HSCT is able to completely halt disease progression in 86%+ of patients. A large percentage of patients also experience symptomatic improvements. Many patients that I've spoken to said fatigue was the first one to go!
I have talked to my doctors and have found that I am a great candidate for this treatment. And the likelihood for me to experience complete remission and reversal of most of my symptoms is about 90%! In the US, they measure disability by an EDSS score (1 to 10, with ten being completely bed ridden and requiring 24hr care). As of now, my EDSS is a 3.5 so I'm in a good spot to have this transplant - I don't have time to wait before things get really bad.
I have found a great hospital and medical team that have treated nearly a thousand MS patients with HSCT. They have an outstanding safety record and are willing to accept my case. The urgency is that the sooner I have this transplant, the better my odds are for getting better. Unfortunately, we are 5 to 10 years away from seeing HSCT as the first line of treatment for MS patients. Because of this, I am faced with having to pay for it out of pocket. I know that if I wait for the trials to be over and then for FDA approval, it will be too late for me.
The total cost of traveling for this treatment, a 28 day stay in the hospital where my stem cells will be harvested, my immune system erased, and then to be given back the healthy stem cells that will regrow a healthy, disease-free immune system is $74,500. The cost is very intimidating, but I am willing to give it my best shot for my health and for my son. For this reason, I am asking for any donation you are able to give - no donation is too small. And if you are unable to donate, I ask for your love and prayers for my family.
On behalf of my son and my family, I thank you for taking the time to read my story and for any form of contribution you are able to give.
God bless.
I am also including the below links for those of you who would like to learn more about this life-changing treatment:
https://www.bbc.com/news/health-35065905 https://academic.oup.com/brain/article/140/11/2776/4002732
https://www.ncbi.nlm.nih.gov/pubmed/28241268
https://www.ncbi.nlm.nih.gov/pubmed/27291994
Thank you for taking the time to learn about my story!!!! (There are also links to addt'l resources on HSCT at the bottom of this page - keep reading!)
In the fall of 2006, I was enjoying a run like I did most days back then, when I noticed something wasn't right. The memory is still so vivid - I couldn't make myself run fast like I normally could. At the time, I was an avid runner and was even on the Cross Country team in college. I tried to push through the strange feeling, but in a few days I noticed I had a small limp on my right side. Figuring it was simply a pinched nerve or something small, I went to see my chiropractor and the first thing he said when he saw me was, "I need to order an MRI for you today...Niki, it looks like you might have MS."
I was terrified. I thought to myself, "I'll never get married or have children." And then I started imagining living my life from a wheelchair.
Multiple Sclerosis (MS) is a cruel and progressively debilitating disease of the central nervous system in which your body's immune system attacks itself. MS attacks your brain and your spine, specifically the protective myelin sheath that surrounds nerves. Without this protective nerve coating, the signals that your brain sends are interrupted, resulting in a host of terrible problems that can affect walking, feeling, thinking, speaking, sleeping, going to the bathroom - just about every function involved in daily life. I cannot describe the fatigue I feel from this disease in a way that a normal, healthy person could understand. But if you could imagine being too tired to even button your pants, that's how I feel from the moment I wake up until I go to bed each night.
Since 2006, I've been on 5 different drugs to treat MS. All of the drugs have one thing in common: they attempt to 'slow down' the progression of the disease. None of the drugs intend to halt the progression or improve your disability, but simply to slow it down. Over time, in my case, each relapse has made me have greater disability and I am in a critical point right now. If I don't do something soon, I know I'll lose my precious ability to walk and to be able to take care of my 2 year old son, Cooper.
A few years ago, I read an article about HSCT - Hematopoietic Stem Cell Transplant for the treatment of MS. Knowing that chemo combined with stem cells has been one of the standard treatments for cancer patients for decades, this was incredibly exciting news. I immediately called my neurologist at the time to see if I could have this treatment, and sadly, he told me that I was "too healthy" - that this aggressive approach was for patients that had advanced forms of the disease. Luckily, since then researchers have changed their minds. Now it is believed that the sooner into your diagnosis that you can have this done, the better, as it stops MS in its tracks. You do not want to wait until things get very bad and you have advanced disability - you want to stop it before permanent, crippling damage is done.
The idea behind HSCT is to essentially 'reboot' your immune system, sort of like hitting Ctrl+Alt+Delete on it. The chemotherapy completely wipes out your faulty immune system and then you are infused with healthy stem cells that have no memory whatsoever of MS. You then are able to grow a new, disease-free immune system. There have been ongoing clinical trials in the US for 10 to 15 years and the results are stunning. The studies have shown that HSCT is able to completely halt disease progression in 86%+ of patients. A large percentage of patients also experience symptomatic improvements. Many patients that I've spoken to said fatigue was the first one to go!
I have talked to my doctors and have found that I am a great candidate for this treatment. And the likelihood for me to experience complete remission and reversal of most of my symptoms is about 90%! In the US, they measure disability by an EDSS score (1 to 10, with ten being completely bed ridden and requiring 24hr care). As of now, my EDSS is a 3.5 so I'm in a good spot to have this transplant - I don't have time to wait before things get really bad.
I have found a great hospital and medical team that have treated nearly a thousand MS patients with HSCT. They have an outstanding safety record and are willing to accept my case. The urgency is that the sooner I have this transplant, the better my odds are for getting better. Unfortunately, we are 5 to 10 years away from seeing HSCT as the first line of treatment for MS patients. Because of this, I am faced with having to pay for it out of pocket. I know that if I wait for the trials to be over and then for FDA approval, it will be too late for me.
The total cost of traveling for this treatment, a 28 day stay in the hospital where my stem cells will be harvested, my immune system erased, and then to be given back the healthy stem cells that will regrow a healthy, disease-free immune system is $74,500. The cost is very intimidating, but I am willing to give it my best shot for my health and for my son. For this reason, I am asking for any donation you are able to give - no donation is too small. And if you are unable to donate, I ask for your love and prayers for my family.
On behalf of my son and my family, I thank you for taking the time to read my story and for any form of contribution you are able to give.
God bless.
I am also including the below links for those of you who would like to learn more about this life-changing treatment:
https://www.bbc.com/news/health-35065905 https://academic.oup.com/brain/article/140/11/2776/4002732
https://www.ncbi.nlm.nih.gov/pubmed/28241268
https://www.ncbi.nlm.nih.gov/pubmed/27291994
Organizer
Niki Stevens
Organizer
Greenwood Lake, NY