Lanette's Journey to Conquer MS
Donation protected
With some changes to the gofund me plat from in 2020 we need to recreate the campaign. Please visit Lanettes new gofundme page
This page has been created to help our friend, Lanny, in her fight against MS. In 2017 Lanny was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) and her world was turned upside down. It has been devastating to watch as MS has had a dramatic impact on her active lifestyle and ability to take care of her young family. Lanny has been an amazing mother, wife and friend and I am excited at the opportunity this treatment gives to stop the progression of this debilitating disease.
Her story is best told from her perspective as she battles with this relentless disease day in, and day out...
Her Story
Hi! My name is Lanette. I’m a wife to a very supportive husband, mom to two amazing kids, and this year I’m looking forward to celebrating my 40th birthday! Today I am reaching out because I am in need of a life changing stem cell treatment.
I have RRMS (Relapse Remitting Multiple Sclerosis), which does not roll off my tongue easily. It has actually taken me a full two years to accept this fact. I have just recently started sharing this struggle with people, this struggle that halts and haunts me daily. Multiple Sclerosis is a potentially disabling disease of the brain, spinal cord and optic nerves (central nervous system). With MS, the immune system attacks the protective myelin sheath that covers the nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage and/or deterioration of the nerves.
A bit about my journey…
I have always been an active person. When I was diagnosed, I was going to the gym 6 days a week, participating in various fitness classes, playing rec league soccer, biking, skiing- you get the picture! I did every activity my heart desired, and on top of that I chased two very active kids and fulfilled all of the needs of their busy schedules as well! I feel so thankful that I’m still able to do so! In 2012, I started searching for answers to questions about my ever changing body and mind, because I just didn't feel like myself anymore. Frustratingly, I went to countless doctors who kept referring me elsewhere. During this time, I also did a lot of research and had completely changed my diet to try and heal a previously diagnosed thyroid disease (Hashimoto and hypothyroid), with the hope that all would be corrected by doing this.
Finally, I was referred to a specialist who completed an MRI scan to check for any signs of tumors on my pituitary gland and hypothalamus, and I was also then introduced to my now neurologist. In March 2016 I learned that I did, in fact, have lesions on my brain which were similar or very much the same as the ones found in patients with MS. I remember crying as I drove home after being made aware of the lesions. It was an overload of emotion, but also a huge, strange sense of relief. I had spent 5 solid years fighting for answers and looking for someone to take me seriously when I talked about my suffering. I finally had an answer! At that time, I knew nothing about MS, except that there was an annual walk and ride that we all hear about in the media. My husband Shaun and I spent (and spend) ALOT of time reading and learning about the disease and everything that comes along with it, all the while continuing our healthy, active and busy lifestyle.
In April of 2017 after a week of extreme stress, I had my first known relapse. I experienced the debilitating effects of MS- my right hand, arm and leg from the knee down became numb, and I was left with a stutter and slurred speech. It took almost 8 months for my body to recover from the relapse. Since then I have been left with a constant tingling on the right side of my body and a foot drop, which I now attend rehab twice a week to learn how to live with.
MS has affected my whole family unit, living with a constant fear of the unknown and the unpredictability of this disease. What I am able to do today may not be what I am able to do tomorrow, and that is terrifying. Right now this disease is invisible from the outside, but symptoms can appear out of nowhere and at any time. One day it seems like everything is stable and the next I wake up with extreme fatigue, pain and numbness. I suffer from heat intolerance, bladder dysfunction, difficulties with coordination and balance, and brain fog. I’ve vowed that I wouldn't let the disease affect me, yet it stops me in my tracks and makes it so I can't even move. It feels so defeating some days.
Over the last year and a half, I have been taking an immune suppressant medication to slow the progression, which comes with an array of side effects of its own. I have new lesions showing on every MRI scan, and I have been feeling my body constantly become more negatively affected by the disease. But, through research and connecting with others with MS, I have found a life changing treatment that could halt the progression of the disease, and allow me to continue to have control over my life. I am desperately in need of this treatment that has been proven to be successful for many MS patients around the world.
Now I am reaching out so that I can undergo this treatment as soon as possible, in order to continue to live my best life.
Hematopoietic Stem Cell Transfusion (HSCT)
All immune cells in the body originate from a common progenitor, known as a hematopoietic stem cell (HSC) found in the bone marrow. Many of these immune cells, known as lymphocytes, are capable of recognizing and defending against foreign pathogens that enter the body. In my case, some of the lymphocyte immune cells have developed a corrupted memory in which they become self-intolerant and attack and damage different cells and tissues in my body, especially the myelin sheath around my brain. The damage to the myelin is the fundamental mechanism that underlies autoimmune disease.
The aim of the entire HSCT treatment process is to stop the immune system from causing damage of the myelin, so that proper electrical conduction within the nervous system is restored. In addition to the halting of the underlying autoimmune disease, the reinstatement of appropriate healthy signaling from nerves to muscles often results in clinical and symptomatic improvement.
The entire course of treatment is around 28 days. In the first weeks, chemotherapy is used to eliminate these self-intolerant auto-toxic lymphocytes, and is the key to also halting the underlying autoimmune disease. Also, hematopoietic stem cells are mobilized to my peripheral blood and then harvested by means of apheresis; a non-surgical procedure similar to dialysis where my blood is passed through a filtering machine by IV. After my stem cells have been collected, another form of chemotherapy is administered again to further eliminate immune cells responsible for the underlying autoimmune disease. When the cleaning of the immune cells is completed, my hematopoietic stem cell autograft will then be infused back into my bloodstream. In the remaining weeks of treatment, stem cells will naturally “home” into my bone marrow and start dividing again in a healthy manner to repopulate my system with new immune cells. This is known as engraftment. During this time, I will be pretty much in isolation as my new immune system becomes strong and efficient. After an extended recuperation, my immune system will be restored with healthy cells, and devoid of auto-toxic cells. The aim of the entire HSCT treatment process is to stop the immune system from causing damage to itself.
What are the funds being used for?
This treatment and related expenses come at a very high cost, and the amount I am hoping to raise covers: testing (needed prior to treatment), the HSCT treatment itself, living expenses (such as accommodation and food), airfare, transportation, and nursing and staff support.
I have spent so much time working on being the best version of myself, and I wish for every opportunity to continue to do so. I want to forever move and live in freedom, and I feel that the only way for this to be my reality is to undergo this stem cell treatment.
Thank you so much for taking the time to listen to my story and for considering to support my journey. Any amount is of help and is so very much appreciated!
* Please note, tipping GoFundMe is automatically added. You will need to unselect if you do not wish to do so.
This page has been created to help our friend, Lanny, in her fight against MS. In 2017 Lanny was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) and her world was turned upside down. It has been devastating to watch as MS has had a dramatic impact on her active lifestyle and ability to take care of her young family. Lanny has been an amazing mother, wife and friend and I am excited at the opportunity this treatment gives to stop the progression of this debilitating disease.
Her story is best told from her perspective as she battles with this relentless disease day in, and day out...
Her Story
Hi! My name is Lanette. I’m a wife to a very supportive husband, mom to two amazing kids, and this year I’m looking forward to celebrating my 40th birthday! Today I am reaching out because I am in need of a life changing stem cell treatment.
I have RRMS (Relapse Remitting Multiple Sclerosis), which does not roll off my tongue easily. It has actually taken me a full two years to accept this fact. I have just recently started sharing this struggle with people, this struggle that halts and haunts me daily. Multiple Sclerosis is a potentially disabling disease of the brain, spinal cord and optic nerves (central nervous system). With MS, the immune system attacks the protective myelin sheath that covers the nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage and/or deterioration of the nerves.
A bit about my journey…
I have always been an active person. When I was diagnosed, I was going to the gym 6 days a week, participating in various fitness classes, playing rec league soccer, biking, skiing- you get the picture! I did every activity my heart desired, and on top of that I chased two very active kids and fulfilled all of the needs of their busy schedules as well! I feel so thankful that I’m still able to do so! In 2012, I started searching for answers to questions about my ever changing body and mind, because I just didn't feel like myself anymore. Frustratingly, I went to countless doctors who kept referring me elsewhere. During this time, I also did a lot of research and had completely changed my diet to try and heal a previously diagnosed thyroid disease (Hashimoto and hypothyroid), with the hope that all would be corrected by doing this.
Finally, I was referred to a specialist who completed an MRI scan to check for any signs of tumors on my pituitary gland and hypothalamus, and I was also then introduced to my now neurologist. In March 2016 I learned that I did, in fact, have lesions on my brain which were similar or very much the same as the ones found in patients with MS. I remember crying as I drove home after being made aware of the lesions. It was an overload of emotion, but also a huge, strange sense of relief. I had spent 5 solid years fighting for answers and looking for someone to take me seriously when I talked about my suffering. I finally had an answer! At that time, I knew nothing about MS, except that there was an annual walk and ride that we all hear about in the media. My husband Shaun and I spent (and spend) ALOT of time reading and learning about the disease and everything that comes along with it, all the while continuing our healthy, active and busy lifestyle.
In April of 2017 after a week of extreme stress, I had my first known relapse. I experienced the debilitating effects of MS- my right hand, arm and leg from the knee down became numb, and I was left with a stutter and slurred speech. It took almost 8 months for my body to recover from the relapse. Since then I have been left with a constant tingling on the right side of my body and a foot drop, which I now attend rehab twice a week to learn how to live with.
MS has affected my whole family unit, living with a constant fear of the unknown and the unpredictability of this disease. What I am able to do today may not be what I am able to do tomorrow, and that is terrifying. Right now this disease is invisible from the outside, but symptoms can appear out of nowhere and at any time. One day it seems like everything is stable and the next I wake up with extreme fatigue, pain and numbness. I suffer from heat intolerance, bladder dysfunction, difficulties with coordination and balance, and brain fog. I’ve vowed that I wouldn't let the disease affect me, yet it stops me in my tracks and makes it so I can't even move. It feels so defeating some days.
Over the last year and a half, I have been taking an immune suppressant medication to slow the progression, which comes with an array of side effects of its own. I have new lesions showing on every MRI scan, and I have been feeling my body constantly become more negatively affected by the disease. But, through research and connecting with others with MS, I have found a life changing treatment that could halt the progression of the disease, and allow me to continue to have control over my life. I am desperately in need of this treatment that has been proven to be successful for many MS patients around the world.
Now I am reaching out so that I can undergo this treatment as soon as possible, in order to continue to live my best life.
Hematopoietic Stem Cell Transfusion (HSCT)
All immune cells in the body originate from a common progenitor, known as a hematopoietic stem cell (HSC) found in the bone marrow. Many of these immune cells, known as lymphocytes, are capable of recognizing and defending against foreign pathogens that enter the body. In my case, some of the lymphocyte immune cells have developed a corrupted memory in which they become self-intolerant and attack and damage different cells and tissues in my body, especially the myelin sheath around my brain. The damage to the myelin is the fundamental mechanism that underlies autoimmune disease.
The aim of the entire HSCT treatment process is to stop the immune system from causing damage of the myelin, so that proper electrical conduction within the nervous system is restored. In addition to the halting of the underlying autoimmune disease, the reinstatement of appropriate healthy signaling from nerves to muscles often results in clinical and symptomatic improvement.
The entire course of treatment is around 28 days. In the first weeks, chemotherapy is used to eliminate these self-intolerant auto-toxic lymphocytes, and is the key to also halting the underlying autoimmune disease. Also, hematopoietic stem cells are mobilized to my peripheral blood and then harvested by means of apheresis; a non-surgical procedure similar to dialysis where my blood is passed through a filtering machine by IV. After my stem cells have been collected, another form of chemotherapy is administered again to further eliminate immune cells responsible for the underlying autoimmune disease. When the cleaning of the immune cells is completed, my hematopoietic stem cell autograft will then be infused back into my bloodstream. In the remaining weeks of treatment, stem cells will naturally “home” into my bone marrow and start dividing again in a healthy manner to repopulate my system with new immune cells. This is known as engraftment. During this time, I will be pretty much in isolation as my new immune system becomes strong and efficient. After an extended recuperation, my immune system will be restored with healthy cells, and devoid of auto-toxic cells. The aim of the entire HSCT treatment process is to stop the immune system from causing damage to itself.
What are the funds being used for?
This treatment and related expenses come at a very high cost, and the amount I am hoping to raise covers: testing (needed prior to treatment), the HSCT treatment itself, living expenses (such as accommodation and food), airfare, transportation, and nursing and staff support.
I have spent so much time working on being the best version of myself, and I wish for every opportunity to continue to do so. I want to forever move and live in freedom, and I feel that the only way for this to be my reality is to undergo this stem cell treatment.
Thank you so much for taking the time to listen to my story and for considering to support my journey. Any amount is of help and is so very much appreciated!
* Please note, tipping GoFundMe is automatically added. You will need to unselect if you do not wish to do so.
Fundraising team (3)
Kimberly Teeuwsen
Organiser
Sherwood Park, AB
Lanette Hagen
Beneficiary
Jeremy Teeuwsen
Team member
Shaun Hagen
Team member
