Christy Is Kissing MS Goodbye
Donation protected
As many of you know I have been living with Multiple Sclerosis for more than 26 years. I was diagnosed in 1994 at the age of 24. Since then I have been on a very committed journey to lead the healthiest possible lifestyle with the goal of delaying the progression of this disease. However, at the age of 51, I find am running out of steam and my mobility is getting worse. Positive thinking and healthy living alone just aren't cutting it. I am taking drastic steps to halt this disease and I am asking you to join me in kissing MS goodbye.
Multiple Sclerosis is a very unforgiving disease. It strikes in the prime of life—usually between ages 20 and 30. In MS the immune system attacks the brain and central nervous system creating gaps in the myelin sheath that insulates the nerves. These gaps disrupt the signals the brain sends to the muscles, affecting how the muscles respond. Symptoms can include fatigue, pain, vision loss, impaired balance, muscle weakness, tremors, decreased coordination, and ultimately the inability to move your body, to walk, or even to swallow.
MS undoubtedly progresses as you grow older. For example, when I was first diagnosed I had mild symptoms like numbness in my hands and feet, loss of balance, weak muscles, body fatigue, and headaches. These symptoms would come for a few weeks or months and then go away. There were also occasional episodes when I had more severe symptoms including loss of vision, paralysis of my left side, severe bouts of depression, and numerous unexpected falls. However, I typically recovered from these episodes over time.
As I aged more symptoms appeared and failed to disappear. I slowly started to lose my mobility. I had to start using a cane occasionally, and then all of the time. After a bad fall last year I had to switch to a walker. Now if I go somewhere with my family that requires walking, I have to take a scooter. Much to my disappointment I need help doing simple daily tasks like showering, cooking, house cleaning and going to appointments. I fear further progression of this disease will leave me in a wheelchair or worse, and unable to do any of these things at all.
To date, I have tried everything I know of to lessen the severity of my MS progression including exercise, biking, strength-training, physical therapy and robotic gait training. I have also tried anti-inflammatory diets, naturopathic medicine, acupuncture, tai chi, micro-current therapy, Chinese medicine, yoga therapy, qigong, massage therapy, as well as a myriad of Western medicine solutions from my neurologist, my primary care physician and my integrative medicine doctor. Sadly nothing is slowing this disease down.
In spite of all my efforts I am getting worse. It’s getting increasingly harder to do all these things and to literally even get out of bed some mornings. It has been a tough pill for me to swallow again and again and again, year after year. In addition to losing my ability to do the things I love like hiking and foraging in the woods, this disease has also caused a huge loss of independence, which does not jibe well with this strong, independent woman. I am most definitely getting worse quicker than I expected. I am fighting to keep the few freedoms I still have like driving and biking and caring for my family. I am trying so desperately to just stay on my own two feet.
Thankfully I have learned about something that could literally change my life. About 5 years ago I found out about HSCT (Hematopoietic Stem Cell Transplant), which is a combination of chemotherapy and stem cell therapy. The stem cells in this case are taken from the patient’s own bone marrow. After a series of chemotherapy treatments the stem cells are transplanted back into the patient’s body. This basically wipes the immune system clean and reboots it. In MS, the defective immune system that has been attacking its own body is reset to a properly functioning immune system, effectively stopping the progression of the disease. The recovery is challenging and long and a little unpredictable but I know I have the strength and courage it takes to work through it. I also have family and friends that will support me through my HSCT recovery. I know in my heart that this is the right path for me.
Unfortunately, HSCT is only available on a research-trial basis in the United States and only for MS patients who are newly diagnosed and still in the beginning stages. I’ve had it for over 26 years and am in the secondary progressive stage, which disqualifies me for these trials. I have had to search outside the United States for an HSCT solution that will take more advanced cases of progressive MS like mine.
Thankfully a group of fellow MSers told me about a facility in Mexico called Clinica Ruiz that has been performing HSCT for more than 20 years. I have met and spoke with many people who have been through HSCT at this clinic and they have nothing but amazing things to say about the staff, facilities and the procedure. I have also spoken with the doctors there and have asked many questions about the procedure. They have also been very honest about expectations and possible setbacks. Yes, it has its risks like any medical procedure but HSCT has been able to STOP THE PROGRESSION OF MS. This is so much more than any of the current disease-modifying MS drugs can offer, as they merely claim to slow the progression of MS with the addition of introducing a multitude of dangerous and intolerable side affects.
After hearing news like this, I cannot sit by and suffer the debilitating effects of this disease anymore. Getting any worse is just not an option for me. I have submitted my application for HSCT at Clinica Ruiz, but that also means I need to raise the funds ASAP. I can’t schedule an exact HSCT date until I have all the funds gathered. Unfortunately this treatment is very expensive--it costs $55,000 to kick this disease to the curb via HSCT. This includes the cost of the 28-day procedure at Clinica Ruiz, pre- and post-treatment medications, and related expenses.
Right now money is the only obstacle that stands between HSCT and me. I am mentally and physically ready to take on this challenge. However I know I cannot do this alone. Can you help me kiss MS goodbye by donating to my campaign? Any amount you can help with is so GREATLY appreciated.
My family and I thank you from the bottom of our hearts!
Love Christy, Matt and Simon
(Venmo@christy-kuziensky)
Multiple Sclerosis is a very unforgiving disease. It strikes in the prime of life—usually between ages 20 and 30. In MS the immune system attacks the brain and central nervous system creating gaps in the myelin sheath that insulates the nerves. These gaps disrupt the signals the brain sends to the muscles, affecting how the muscles respond. Symptoms can include fatigue, pain, vision loss, impaired balance, muscle weakness, tremors, decreased coordination, and ultimately the inability to move your body, to walk, or even to swallow.
MS undoubtedly progresses as you grow older. For example, when I was first diagnosed I had mild symptoms like numbness in my hands and feet, loss of balance, weak muscles, body fatigue, and headaches. These symptoms would come for a few weeks or months and then go away. There were also occasional episodes when I had more severe symptoms including loss of vision, paralysis of my left side, severe bouts of depression, and numerous unexpected falls. However, I typically recovered from these episodes over time.
As I aged more symptoms appeared and failed to disappear. I slowly started to lose my mobility. I had to start using a cane occasionally, and then all of the time. After a bad fall last year I had to switch to a walker. Now if I go somewhere with my family that requires walking, I have to take a scooter. Much to my disappointment I need help doing simple daily tasks like showering, cooking, house cleaning and going to appointments. I fear further progression of this disease will leave me in a wheelchair or worse, and unable to do any of these things at all.
To date, I have tried everything I know of to lessen the severity of my MS progression including exercise, biking, strength-training, physical therapy and robotic gait training. I have also tried anti-inflammatory diets, naturopathic medicine, acupuncture, tai chi, micro-current therapy, Chinese medicine, yoga therapy, qigong, massage therapy, as well as a myriad of Western medicine solutions from my neurologist, my primary care physician and my integrative medicine doctor. Sadly nothing is slowing this disease down.
In spite of all my efforts I am getting worse. It’s getting increasingly harder to do all these things and to literally even get out of bed some mornings. It has been a tough pill for me to swallow again and again and again, year after year. In addition to losing my ability to do the things I love like hiking and foraging in the woods, this disease has also caused a huge loss of independence, which does not jibe well with this strong, independent woman. I am most definitely getting worse quicker than I expected. I am fighting to keep the few freedoms I still have like driving and biking and caring for my family. I am trying so desperately to just stay on my own two feet.
Thankfully I have learned about something that could literally change my life. About 5 years ago I found out about HSCT (Hematopoietic Stem Cell Transplant), which is a combination of chemotherapy and stem cell therapy. The stem cells in this case are taken from the patient’s own bone marrow. After a series of chemotherapy treatments the stem cells are transplanted back into the patient’s body. This basically wipes the immune system clean and reboots it. In MS, the defective immune system that has been attacking its own body is reset to a properly functioning immune system, effectively stopping the progression of the disease. The recovery is challenging and long and a little unpredictable but I know I have the strength and courage it takes to work through it. I also have family and friends that will support me through my HSCT recovery. I know in my heart that this is the right path for me.
Unfortunately, HSCT is only available on a research-trial basis in the United States and only for MS patients who are newly diagnosed and still in the beginning stages. I’ve had it for over 26 years and am in the secondary progressive stage, which disqualifies me for these trials. I have had to search outside the United States for an HSCT solution that will take more advanced cases of progressive MS like mine.
Thankfully a group of fellow MSers told me about a facility in Mexico called Clinica Ruiz that has been performing HSCT for more than 20 years. I have met and spoke with many people who have been through HSCT at this clinic and they have nothing but amazing things to say about the staff, facilities and the procedure. I have also spoken with the doctors there and have asked many questions about the procedure. They have also been very honest about expectations and possible setbacks. Yes, it has its risks like any medical procedure but HSCT has been able to STOP THE PROGRESSION OF MS. This is so much more than any of the current disease-modifying MS drugs can offer, as they merely claim to slow the progression of MS with the addition of introducing a multitude of dangerous and intolerable side affects.
After hearing news like this, I cannot sit by and suffer the debilitating effects of this disease anymore. Getting any worse is just not an option for me. I have submitted my application for HSCT at Clinica Ruiz, but that also means I need to raise the funds ASAP. I can’t schedule an exact HSCT date until I have all the funds gathered. Unfortunately this treatment is very expensive--it costs $55,000 to kick this disease to the curb via HSCT. This includes the cost of the 28-day procedure at Clinica Ruiz, pre- and post-treatment medications, and related expenses.
Right now money is the only obstacle that stands between HSCT and me. I am mentally and physically ready to take on this challenge. However I know I cannot do this alone. Can you help me kiss MS goodbye by donating to my campaign? Any amount you can help with is so GREATLY appreciated.
My family and I thank you from the bottom of our hearts!
Love Christy, Matt and Simon
(Venmo@christy-kuziensky)
Co-organizers (10)
Christy Miller Kuziensky
Organizer
Leo-Cedarville, IN
Matt Kuziensky
Co-organizer
Jill Strawder-Bubala
Co-organizer
Teri Baron
Co-organizer
Nicholas Miller
Co-organizer