Jessica's HSCT Journey to Stop MS
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Jessica's HSCT Journey to End the MonSter
My name is Jessica Simpson. I am a 26 year old mother of 2 who was diagnosed with Multiple Sclerosis on May 4th 2016, a few days before my oldest son turned 1. This disease has caused my life to completely change and I am still fighting every single day to find/accept my new normal. MS has impacted my life in many ways; physically, emotionally, financially, and socially. Most significantly, this horrible disease has stripped me of my freedom to be completely independent and to be the mother I always dreamed of being.
I started getting sick in September of 2015, only four months after my oldest son Isaiah was born; and I have not been the same since. I have had at least 6 relapses in the span of 1.5 years and have had numerous lesions on my brain and spine. At the time of diagnosis, I had over 6 active lesions on my brain and 2 on my cervical spine. My brain is covered in lesions, which indicates that I have had this disease for a while, but I never knew it. This explains the many years of strange illnesses and symptoms that I had that no doctor ever cared to explore or stated it was because I was overweight and had anxiety.
My day to day symptoms of MS include: chronic/debilitating fatigue, intermittent nerve pain from head to toe, altered sensations in my hands and feet, constant ringing in my ears, muscle spasticity, numbness in various parts of body, migraines and daily headaches, depression & anxiety, eye pain and blurred vision, cognitive impairment, vertigo, and short term memory issues. There are some days that I cannot even pick up my son and this just breaks my heart. I am struggling to come to terms with this disease as it has taken so much away from me, that I am now learning to live with and cope with how different my life has become. Before MS, I was a go-getter, hard worker, and had dreams of becoming an attorney and politician. I was that type-A woman who was able to do any and everything, but MS has definitely stopped me in my tracks. Now, I only dream of getting the disease under control and feeling better so that I can be an amazing mother to my children.
My MS specialist has urged me that my disease activity is very aggressive and he fears that if I do not take aggressive measures to stop the disease activity, then I could end up permanently disabled. We have tried medications and many doses of steroids, but still I continue to relapse and feel horrible. As the primary financial provider of my family, I have to take action because being disabled is simply not an option. At this point, I have conducted research and have decided that I want and need to pursue HSCT (Hematopoietic stem cell transplantation), as it is the closest thing that us MS warriors have to a cure. The hope for HSCT is to halt all disease activity and to put MS into remission for the rest of my life. This would mean that I would no longer need any more MS medication and hopefully my body would have time to heal from all of the disease activity and I could potentially have some symptoms subside. This is my last hope to live a "normal" life!
MS is an autoimmune disease that attacks the central nervous system, which is the brain and spine cord. HSCT attempts to "reboot" the immune system, which for MS patients is responsible for damaging the brain and spinal cord. In HSCT for MS, hematopoietic (blood cell-producing) stem cells, which are derived from a person's own bone marrow or blood, are collected and stored, and the rest of the person's immune cells are killed/depleted with chemotherapy. Then, the stems cells are reintroduced into the body where they migrate to the bone marrow and over time produce new white blood cells. The ultimate goal is to erase any memory that the immune system has of MS and to stop the disease activity.
In the United States, HSCT is not FDA approved as of yet for MS but doctors are currently conducting studies and research on the benefits of this procedure for MS patients. Dr. Burt, at Northwestern Medicine in Chicago, has been conducting studies for many years and has huge success rates with patients with MS and other autoimmune diseases. I have recently been accepted into Dr. Burt's program and my insurance has agreed to cover the cost of treatment! This is so exciting :)
The procedure occurs over a two month period. That is two months that I will be in Chicago, and two months away from my children. Two months that I am not able to work, and two months that I will have to pay for my caretaker and I to stay in the city of Chicago. Needless to say, fundraising is vital! I need all of your help to make sure that I can raise enough funds to be able to get this life changing treatment, so that I can be healthy again and be the mother that my children deserve. This is the opportunity of a lifetime, and I truly hope that I can get as much support as I can.
Please share my story and add people to this page who want to see my life changing journey!
I received my dates!
August 21-24: Pre-testing
September 11-23: Mobilization
October 2-Until: Transplant
October 9: Stem cell birthday :)
My name is Jessica Simpson. I am a 26 year old mother of 2 who was diagnosed with Multiple Sclerosis on May 4th 2016, a few days before my oldest son turned 1. This disease has caused my life to completely change and I am still fighting every single day to find/accept my new normal. MS has impacted my life in many ways; physically, emotionally, financially, and socially. Most significantly, this horrible disease has stripped me of my freedom to be completely independent and to be the mother I always dreamed of being.
I started getting sick in September of 2015, only four months after my oldest son Isaiah was born; and I have not been the same since. I have had at least 6 relapses in the span of 1.5 years and have had numerous lesions on my brain and spine. At the time of diagnosis, I had over 6 active lesions on my brain and 2 on my cervical spine. My brain is covered in lesions, which indicates that I have had this disease for a while, but I never knew it. This explains the many years of strange illnesses and symptoms that I had that no doctor ever cared to explore or stated it was because I was overweight and had anxiety.
My day to day symptoms of MS include: chronic/debilitating fatigue, intermittent nerve pain from head to toe, altered sensations in my hands and feet, constant ringing in my ears, muscle spasticity, numbness in various parts of body, migraines and daily headaches, depression & anxiety, eye pain and blurred vision, cognitive impairment, vertigo, and short term memory issues. There are some days that I cannot even pick up my son and this just breaks my heart. I am struggling to come to terms with this disease as it has taken so much away from me, that I am now learning to live with and cope with how different my life has become. Before MS, I was a go-getter, hard worker, and had dreams of becoming an attorney and politician. I was that type-A woman who was able to do any and everything, but MS has definitely stopped me in my tracks. Now, I only dream of getting the disease under control and feeling better so that I can be an amazing mother to my children.
My MS specialist has urged me that my disease activity is very aggressive and he fears that if I do not take aggressive measures to stop the disease activity, then I could end up permanently disabled. We have tried medications and many doses of steroids, but still I continue to relapse and feel horrible. As the primary financial provider of my family, I have to take action because being disabled is simply not an option. At this point, I have conducted research and have decided that I want and need to pursue HSCT (Hematopoietic stem cell transplantation), as it is the closest thing that us MS warriors have to a cure. The hope for HSCT is to halt all disease activity and to put MS into remission for the rest of my life. This would mean that I would no longer need any more MS medication and hopefully my body would have time to heal from all of the disease activity and I could potentially have some symptoms subside. This is my last hope to live a "normal" life!
MS is an autoimmune disease that attacks the central nervous system, which is the brain and spine cord. HSCT attempts to "reboot" the immune system, which for MS patients is responsible for damaging the brain and spinal cord. In HSCT for MS, hematopoietic (blood cell-producing) stem cells, which are derived from a person's own bone marrow or blood, are collected and stored, and the rest of the person's immune cells are killed/depleted with chemotherapy. Then, the stems cells are reintroduced into the body where they migrate to the bone marrow and over time produce new white blood cells. The ultimate goal is to erase any memory that the immune system has of MS and to stop the disease activity.
In the United States, HSCT is not FDA approved as of yet for MS but doctors are currently conducting studies and research on the benefits of this procedure for MS patients. Dr. Burt, at Northwestern Medicine in Chicago, has been conducting studies for many years and has huge success rates with patients with MS and other autoimmune diseases. I have recently been accepted into Dr. Burt's program and my insurance has agreed to cover the cost of treatment! This is so exciting :)
The procedure occurs over a two month period. That is two months that I will be in Chicago, and two months away from my children. Two months that I am not able to work, and two months that I will have to pay for my caretaker and I to stay in the city of Chicago. Needless to say, fundraising is vital! I need all of your help to make sure that I can raise enough funds to be able to get this life changing treatment, so that I can be healthy again and be the mother that my children deserve. This is the opportunity of a lifetime, and I truly hope that I can get as much support as I can.
Please share my story and add people to this page who want to see my life changing journey!
I received my dates!
August 21-24: Pre-testing
September 11-23: Mobilization
October 2-Until: Transplant
October 9: Stem cell birthday :)
Organizer
Jessica Simpson
Organizer
Charlotte, NC