Chad Adkins...... HSCT Reboot ME!
Donation protected
About Me:
Hi, I’m Chad Adkins and I’m 38 years old and along with my wife, Lori, we are raising two very energetic and loving young boys. I was diagnosed with Multiple Sclerosis (MS) in November of 2014 and have realized since, I’m in the fight of my life against this horrific disease. But I will win!
Impact on My Life
My first attack occurred in 2012 when I began having double vision. After seeing an Optometrist, an Ophthalmologist, a MD, a Surgeon, a Chiropractor, and 3 Neurologists – in 30 months – I was finally diagnosed with Multiple Sclerosis (MS).
From the outside I look pretty normal and over the past few years only people such as my family have noticed my outward challenges. However, the cumulative effects of the attacks have started to show themselves more publicly the past few months. I have foot drop (dragging the front of my foot when I walk – primarily my right side). I lose my balance easily now which has resulted in me falling more often and I occasionally use a cane. I have numbness and altered sensation - especially in my feet, legs, and hands. This means I either don't have sensation or what I do feel is not normal – such as extreme tightness and it is always changing. The pain and tightness in my legs makes it difficult to sleep at night. I have difficulty holding my fork and pens – the grip and coordination of my right hand is lacking. Unfortunately, my list goes on – like bladder and bowel issues, but I've been pretty good at hiding it all, partially out of embarrassment.
I’m trying to learn how to manage the episodes. I’ve changed my diet and we’ve changed our life. I can’t be alone with the boys for long periods of time – not only do they fatigue me – but I can’t be there for them. If one were to get into a situation and get hurt – which our boys typically do – I can’t move fast enough to help them. I can’t chase them, I can’t run with them.
In January of this year, I began disease modifying therapy called Rebif. It’s an injectable medication that I inject myself with 3 times a week. It’s painful, I don’t like it and I don’t think it’s slowing the progression of my disease – which is what it should do.
My Opportunity
This past February I learned about a Phase III Clinical Trial known as Hematopoietic Stem Cell Transplants (HSCT) being performed by Dr. Richard K. Burt, Chief – Division of Immunotherapy at Northwestern University. The Division of Immunotherapy and Autoimmune Diseases at Northwestern University is one of only a few centers in the world – and yes, I said world – devoted to a unique area of treatment and research that provides intensive immunosuppression and hematopoietic stem cell transplantation for patients with severe autoimmune diseases. See http://www.stemcell-immunotherapy.com/ for more details.
HSCT is a 8+ week program in which my own blood stem cells (from my bone marrow) are harvested then injected back into my body after high doses of chemotherapy are used to kill off my lymphocytes (a type of White Blood Cell). HSCT erases the immune systems memory and basically hits the “reset button”. This stops the underlying MS disease activity and allows the body a chance to repair itself.
Dr. Burt performed America’s first HSCT back in 1996 and his group has performed more than 200 of these transplants since 2000.
In phase II studies conducted three years after the HSCT procedure, 100% of Dr. Burt’s patients have shown evidence that their MS has totally stopped its progression. In 81% of the cases, many MS symptoms improved as the transplanted stem cells rebuild the nerves.
On May 27th, Lori and I met with Dr. Burt and his team in Chicago, to see if my conditions met all of the requirements to receive the HSCT treatment offered at Northwestern University. One qualification for the Phase III Clinical Trial is to be considered RRMS – Relapsing Remitting Multiple Sclerosis – a stage in which flare ups occur for a period of time and then symptoms disappear. Unfortunately I did not qualify for the study. Dr. Burt reviewed my MRIs and believes that my condition has worsened since November and I am declining to what is referred to as SPMS – Secondary Progressive Multiple Sclerosis – which is the next stage of MS. The good news – Dr. Burt indicated that he considers my condition transitioning and his treatment should help me, therefore he agreed to treat me off-study, which means I get HSCT treatment!!
The Need
Unfortunately, the HSCT procedure itself begins at $125,000 and goes up. And at this point we don’t know if the procedure will be covered by our insurance. And there will be additional costs incurred that our insurance will not cover; such as travel, food, lodging and care after the treatment. While in Chicago I will need a caregiver – and as of now – Dad drew the short straw – so he’ll be taking care of me while in Chicago. Our fundraising goal of $25,000 is based on a budget that covers all of the additional expenses that will need to be covered in order to see me through this treatment and year-long recovery.
My Hope
Dr. Burt does not call this a cure – But I DO. The results are amazing and I want to send my MS into remission. I want to be able to play with my kids without pain, discomfort, or fear of injuring them or myself. I want the opportunity to watch my boys graduate from high school, attend their weddings, and someday meet my grandkids. I want to be able to grow old together with my wife. I want to live!
Thank you for your prayers, generosity, and for checking out My Story, please share this link with the people you know, with a little help from a lot of people we will do this!
Follow me:
hsctrebootme.wordpress.com
Again - Thank you!
The Disease:
MS is a disease in which your immune system attacks the protective sheath (myelin) that covers your nerves. Myelin damage disrupts communication between your brain and the rest of your body. Signs and symptoms vary widely, depending on the amount of damage and which nerves are affected. Typically, attacks or episodes manifest in the form of:
Numbness or weakness in one or more limbs;
Partial or complete loss of vision;
Double vision or blurring of vision;
Tingling or pain in parts of your body;
Electric-shock sensations that occur with certain neck movements, especially bending the neck forward;
Tremor, lack of coordination or unsteady gait;
Slurred speech; or
Severe fatigue.
While these attacks seem to come randomly the effects tend to be cumulative, meaning that between attacks the body does not recover to its pre-attack condition. Over time the progression of episodes can become debilitating.
Currently, medications to fight MS (which come with their own side-effects) are focused on slowing the progression of the disease. In the case of severe attacks steroids are typically prescribed to help shorten the length of the attack.
Hi, I’m Chad Adkins and I’m 38 years old and along with my wife, Lori, we are raising two very energetic and loving young boys. I was diagnosed with Multiple Sclerosis (MS) in November of 2014 and have realized since, I’m in the fight of my life against this horrific disease. But I will win!
Impact on My Life
My first attack occurred in 2012 when I began having double vision. After seeing an Optometrist, an Ophthalmologist, a MD, a Surgeon, a Chiropractor, and 3 Neurologists – in 30 months – I was finally diagnosed with Multiple Sclerosis (MS).
From the outside I look pretty normal and over the past few years only people such as my family have noticed my outward challenges. However, the cumulative effects of the attacks have started to show themselves more publicly the past few months. I have foot drop (dragging the front of my foot when I walk – primarily my right side). I lose my balance easily now which has resulted in me falling more often and I occasionally use a cane. I have numbness and altered sensation - especially in my feet, legs, and hands. This means I either don't have sensation or what I do feel is not normal – such as extreme tightness and it is always changing. The pain and tightness in my legs makes it difficult to sleep at night. I have difficulty holding my fork and pens – the grip and coordination of my right hand is lacking. Unfortunately, my list goes on – like bladder and bowel issues, but I've been pretty good at hiding it all, partially out of embarrassment.
I’m trying to learn how to manage the episodes. I’ve changed my diet and we’ve changed our life. I can’t be alone with the boys for long periods of time – not only do they fatigue me – but I can’t be there for them. If one were to get into a situation and get hurt – which our boys typically do – I can’t move fast enough to help them. I can’t chase them, I can’t run with them.
In January of this year, I began disease modifying therapy called Rebif. It’s an injectable medication that I inject myself with 3 times a week. It’s painful, I don’t like it and I don’t think it’s slowing the progression of my disease – which is what it should do.
My Opportunity
This past February I learned about a Phase III Clinical Trial known as Hematopoietic Stem Cell Transplants (HSCT) being performed by Dr. Richard K. Burt, Chief – Division of Immunotherapy at Northwestern University. The Division of Immunotherapy and Autoimmune Diseases at Northwestern University is one of only a few centers in the world – and yes, I said world – devoted to a unique area of treatment and research that provides intensive immunosuppression and hematopoietic stem cell transplantation for patients with severe autoimmune diseases. See http://www.stemcell-immunotherapy.com/ for more details.
HSCT is a 8+ week program in which my own blood stem cells (from my bone marrow) are harvested then injected back into my body after high doses of chemotherapy are used to kill off my lymphocytes (a type of White Blood Cell). HSCT erases the immune systems memory and basically hits the “reset button”. This stops the underlying MS disease activity and allows the body a chance to repair itself.
Dr. Burt performed America’s first HSCT back in 1996 and his group has performed more than 200 of these transplants since 2000.
In phase II studies conducted three years after the HSCT procedure, 100% of Dr. Burt’s patients have shown evidence that their MS has totally stopped its progression. In 81% of the cases, many MS symptoms improved as the transplanted stem cells rebuild the nerves.
On May 27th, Lori and I met with Dr. Burt and his team in Chicago, to see if my conditions met all of the requirements to receive the HSCT treatment offered at Northwestern University. One qualification for the Phase III Clinical Trial is to be considered RRMS – Relapsing Remitting Multiple Sclerosis – a stage in which flare ups occur for a period of time and then symptoms disappear. Unfortunately I did not qualify for the study. Dr. Burt reviewed my MRIs and believes that my condition has worsened since November and I am declining to what is referred to as SPMS – Secondary Progressive Multiple Sclerosis – which is the next stage of MS. The good news – Dr. Burt indicated that he considers my condition transitioning and his treatment should help me, therefore he agreed to treat me off-study, which means I get HSCT treatment!!
The Need
Unfortunately, the HSCT procedure itself begins at $125,000 and goes up. And at this point we don’t know if the procedure will be covered by our insurance. And there will be additional costs incurred that our insurance will not cover; such as travel, food, lodging and care after the treatment. While in Chicago I will need a caregiver – and as of now – Dad drew the short straw – so he’ll be taking care of me while in Chicago. Our fundraising goal of $25,000 is based on a budget that covers all of the additional expenses that will need to be covered in order to see me through this treatment and year-long recovery.
My Hope
Dr. Burt does not call this a cure – But I DO. The results are amazing and I want to send my MS into remission. I want to be able to play with my kids without pain, discomfort, or fear of injuring them or myself. I want the opportunity to watch my boys graduate from high school, attend their weddings, and someday meet my grandkids. I want to be able to grow old together with my wife. I want to live!
Thank you for your prayers, generosity, and for checking out My Story, please share this link with the people you know, with a little help from a lot of people we will do this!
Follow me:
hsctrebootme.wordpress.com
Again - Thank you!
The Disease:
MS is a disease in which your immune system attacks the protective sheath (myelin) that covers your nerves. Myelin damage disrupts communication between your brain and the rest of your body. Signs and symptoms vary widely, depending on the amount of damage and which nerves are affected. Typically, attacks or episodes manifest in the form of:
Numbness or weakness in one or more limbs;
Partial or complete loss of vision;
Double vision or blurring of vision;
Tingling or pain in parts of your body;
Electric-shock sensations that occur with certain neck movements, especially bending the neck forward;
Tremor, lack of coordination or unsteady gait;
Slurred speech; or
Severe fatigue.
While these attacks seem to come randomly the effects tend to be cumulative, meaning that between attacks the body does not recover to its pre-attack condition. Over time the progression of episodes can become debilitating.
Currently, medications to fight MS (which come with their own side-effects) are focused on slowing the progression of the disease. In the case of severe attacks steroids are typically prescribed to help shorten the length of the attack.
Organizer
Lori Meadows Adkins
Organizer
Divide, WV