My Father's Fight with CIDP
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Hi, my name is Jessie and I want to tell the story of my best friend, my dad, Tom Dreiling.
What is CIDP?
Several years ago, my dad was diagnosed with an autoimmune disease called CIDP. This stands for chronic inflammatory demyelinating polyneuropathy. It is a chronic version of the Gillian barre syndrome. CIDP and GBS cause weakness and paralysis throughout a person’s body. It starts at the feet and works its way up causing pain and stiffness. Only 1 out of 100,000 people will develop this disease.
How it has affected us
My dad became ill in January of 2015, his health progressively declined, and it has been over a year since he has been able to walk. Prior to getting sick, he was in great shape, playing full-court basketball every morning before going to work.
There have been months at a time where he was not able to be home alone and there’s times where he is not able to sleep in a room by himself. My twin John, and I have taken turns waking up every hour to help our dad get comfortable and go to the bathroom. I have seen him lose his ability to eat, walk, rollover in bed, and so many other cognitive functions that we take for granted. We have spent lengths of time in hospitals. We even took a trip to John Hopkin’s hospital in Baltimore to meet with incredible doctors that were not able to come up with any answers to make him better.
He has undergone: chemotherapy, over 40 plasmaphereses, nerve conductivity tests, heart ablation surgery, swallow tests, bone scans, spinal fluid tests, biopsies, IVGV treatments, physical therapy, and so much more. He has a colostomy bag, feeding tube, and is basically bedridden. There hasn’t been a treatment that has shown much potential in being able to give him a “normal” life again. Due to his condition, my father has been forced to take early retirement. He is on long term disability and has applied for Medicare disability but this is a long process. Through this all, my dad has been so incredibly strong.
Stem Cell Treatment
People from all around the world have been affected by this awful disease. A lot of them have been lucky and even improved from some of the same treatments we have tried. Not all cases are as severe as my father’s is. Last summer, my dad and some family members took a van to Feinberg School of Medicine at Northwestern University to meet with Dr. Burt and other amazing doctors that are doing stem cell research. The Division of Immunotherapy and Autoimmune Diseases (DIAD) is the only center in the world devoted to a unique area of treatment and research utilizing stem cell transplantation in clinical trials for autoimmune diseases and vascular diseases. After reviewing his records and doing a study on my dad, these doctors want to work on him and we feel like this is the last option and hope available to improve his quality of life. My family has met people that have been in my dad’s position and are walking again by going through this 10-week treatment of Stem Cell Transplant that we are hoping to try. There have been amazing success stories from patients that participated in this program.
How you can help
Unfortunately, even though there have been success stories, it is still considered to be in the experimental research stages. Therefore, our insurance company has denied us multiple times (and the treatment is extremely expensive!!). I feel like we are out of options. I have made this account to bring awareness to a disease my family had never heard of, to tell my dad’s story because he inspires me, and to give people the opportunity to help us out. My dad has always been a very good dad to me and I want to find a way to give back to him. Please feel free to post a message to me with questions regarding anything I’ve talked about and please take time to research CIDP.
Our goals
Growing up I saw my dad help countless families and individuals. He always coached sports teams for my brother and I and he taught us every lesson he could to make us selfless and compassionate people. When we thought that he was not going to make it through this disease, he always reminded me to stay focused on my goals and always put my family before anything. When asked what his major goal was he replied that he wanted to become healthy enough to walk me down the aisle on my wedding day. I never saw him ask for anything growing up. He always taught me to earn things through hard work. Through everything we’ve been through, John and I have been very proud of my dad. We ask that everyone takes the time to share our story and help out in any way possible.
More Information about CIDP
https://www.youtube.com/watch?v=oDSWrMkvnn0&feature=youtu.be
Additional Information on stem cell use for autoimmune disorders told by Dr. Burt
https://www.youtube.com/watch?v=Iafkr-qRnm0&app=desktop
What is CIDP?
Several years ago, my dad was diagnosed with an autoimmune disease called CIDP. This stands for chronic inflammatory demyelinating polyneuropathy. It is a chronic version of the Gillian barre syndrome. CIDP and GBS cause weakness and paralysis throughout a person’s body. It starts at the feet and works its way up causing pain and stiffness. Only 1 out of 100,000 people will develop this disease.
How it has affected us
My dad became ill in January of 2015, his health progressively declined, and it has been over a year since he has been able to walk. Prior to getting sick, he was in great shape, playing full-court basketball every morning before going to work.
There have been months at a time where he was not able to be home alone and there’s times where he is not able to sleep in a room by himself. My twin John, and I have taken turns waking up every hour to help our dad get comfortable and go to the bathroom. I have seen him lose his ability to eat, walk, rollover in bed, and so many other cognitive functions that we take for granted. We have spent lengths of time in hospitals. We even took a trip to John Hopkin’s hospital in Baltimore to meet with incredible doctors that were not able to come up with any answers to make him better.
He has undergone: chemotherapy, over 40 plasmaphereses, nerve conductivity tests, heart ablation surgery, swallow tests, bone scans, spinal fluid tests, biopsies, IVGV treatments, physical therapy, and so much more. He has a colostomy bag, feeding tube, and is basically bedridden. There hasn’t been a treatment that has shown much potential in being able to give him a “normal” life again. Due to his condition, my father has been forced to take early retirement. He is on long term disability and has applied for Medicare disability but this is a long process. Through this all, my dad has been so incredibly strong.
Stem Cell Treatment
People from all around the world have been affected by this awful disease. A lot of them have been lucky and even improved from some of the same treatments we have tried. Not all cases are as severe as my father’s is. Last summer, my dad and some family members took a van to Feinberg School of Medicine at Northwestern University to meet with Dr. Burt and other amazing doctors that are doing stem cell research. The Division of Immunotherapy and Autoimmune Diseases (DIAD) is the only center in the world devoted to a unique area of treatment and research utilizing stem cell transplantation in clinical trials for autoimmune diseases and vascular diseases. After reviewing his records and doing a study on my dad, these doctors want to work on him and we feel like this is the last option and hope available to improve his quality of life. My family has met people that have been in my dad’s position and are walking again by going through this 10-week treatment of Stem Cell Transplant that we are hoping to try. There have been amazing success stories from patients that participated in this program.
How you can help
Unfortunately, even though there have been success stories, it is still considered to be in the experimental research stages. Therefore, our insurance company has denied us multiple times (and the treatment is extremely expensive!!). I feel like we are out of options. I have made this account to bring awareness to a disease my family had never heard of, to tell my dad’s story because he inspires me, and to give people the opportunity to help us out. My dad has always been a very good dad to me and I want to find a way to give back to him. Please feel free to post a message to me with questions regarding anything I’ve talked about and please take time to research CIDP.
Our goals
Growing up I saw my dad help countless families and individuals. He always coached sports teams for my brother and I and he taught us every lesson he could to make us selfless and compassionate people. When we thought that he was not going to make it through this disease, he always reminded me to stay focused on my goals and always put my family before anything. When asked what his major goal was he replied that he wanted to become healthy enough to walk me down the aisle on my wedding day. I never saw him ask for anything growing up. He always taught me to earn things through hard work. Through everything we’ve been through, John and I have been very proud of my dad. We ask that everyone takes the time to share our story and help out in any way possible.
More Information about CIDP
https://www.youtube.com/watch?v=oDSWrMkvnn0&feature=youtu.be
Additional Information on stem cell use for autoimmune disorders told by Dr. Burt
https://www.youtube.com/watch?v=Iafkr-qRnm0&app=desktop
Organizer
Jessie Dreiling
Organizer
Orlando, FL
