A SCLERODERMA JOURNEY

Site Overview

Hi My name is Nancy. I was diagnosed with Systemic Sclerosis (Scleroderma) over 10 years ago. I decided to create this website to promote awareness and hopefully provide some valuable resources. Since I started this website my journey has now changed. Though the scleroderma was severe when I started the site, my health and physical ability has deteriorated even more and the scleroderma has become more active. I won’t be able to travel for any more trials at this point. I can no longer remain full-time as I cannot full fill the duties of the position and my doctors say it is physically causing issues with my health, and I should not have pushed it so long. SO A NEW JOURNEY BEGAN... I started the disability process and was approved. The process and steps are recorded on my Disability Page. You can view My Story here, and see the symptoms and progression of the disease as it affected me, but the goal of my site is to help those who have scleroderma or family and caregivers to have a quick start to good resources and/or physicians I have actually met. My personal goal was participating in clinical research studies, so hopefully better drugs, treatments, and ultimately a cure will be available for people diagnosed with scleroderma. I participated in the Cytori STAR Trial, and another trial for calcinosis. I’ve met wonderful doctors and researchers who are dedicated to finding a cure and better treatments for this disease. Though my situation has changed, I encourage anyone who can to participate.

Recording Disease Progression

I think tracking the progression of the disease as it relates to you can be very beneficial for your care, your doctors information, and research. Regretfully I did not keep a personal record when I was diagnosed with the disease. The kind of personal tracking I am talking about is a journal of weekly or monthly changes along with pictures (almost everyone has a smart phone). Since scleroderma is different for everyone, how the disease manifests itself and progresses for each individual is valuable. The more information you record, the more complete the picture. Plus you will be providing informa- tion as it happens, instead of trying to recap it later.

Participating in Clinical Trials and Info from Past Trials

If you have scleroderma and wish to participate in a trial, the best resource is www.clinicaltrials.gov . The site has the general search screen shown below, or you can select Advanced Search for more options to narrow it down. The quickest way is to type “SCLERODERMA” condition field, maybe with a few more keywords and click search. You will see results similar to below. The information provided includes a description of the trial, if it is active or completed, recruiting or not yet recording etc. If a trial is in progress you can view its history, if it is completed you can see the results of the trial. An excellent source of information.

Specialists and Resources

The Scleroderma Foundation website lists Specialists and Scleroderma Centers. Below are specialists I have personally seen: Dr. Jerry Molitor - University of Minnesota I started seeing Dr. Molitor when I was first diagnosed and still see him as my specialist. He is the specialist at the Scleroderma clinic at the University. Dr. Molitor was instrumental in providing treatment and physical therapy to help me regain my flexability and mobility to remain in the workforce. He is a caring expert, involved in research, and and lucky for me he is located in the midwest since I am from North Dakota. Dr. Molitor and his staff have really gone to bat for me recently as my condition declined. They got a very promising drug called actemra approved thru insurance for me. I have had two infusions so far - Jan 2018 and Feb 2018. Dr. Daniel Furst - Pacific Arthritis - UCLA I met Dr. Furst in a clinical trial. He is a professor of medicine at UCLA Medical Center, an adjunct professor at the University of Washington - Seattle, and a research professor at the University of Florence in Italy. He has practices at the Arthritis Associates of Southern California, as well as the Seattle Rheumatology Associates in Seattle. Dr. Furst is a wealth of knowledge. He is involved in the Scleroderma foundation, research studies, and has written a book on scleroderma. He travels the states and other countries working with and training specialists. I think anyone who has scleroderma can benefit from making an appointment and meeting Dr. Furst whether you are able to continue care with him or not. I was in another study with Dr. Furst and am now seeing him as a patient. Amanda Lausch - Wound Clinic Jamestown Regional Medical Center Amanda is a wound & hyperbaric specialist at the Jamestown Regional Medical Center Wound Clinic in Jamestown, ND, which is a Healogics facility. She has an extensive knowledge of scleroderma and has been been treating my finger ulcers, and removing calcinosis promoting good tissue growth and healing in my fingers and hands. Her care has been finger-saving for me, with proactively promoting healing and minimizing any risk of infection. Dr. Lorinda Chung - Stanford University I have not met Dr. Chung personally, but have listed her here as she is the head of the trial for the treatment for calcinosis I was in. WEB RESOURCES - Scleroderma Foundation Scleroderma News ClinicalTrials.gov Scleroderma Patient-centered Intervention Network (SPIN)

My Journey with Scleroderma

Prior to 10 years ago I was a runner, snow skier, water skier, golfer, scuba diver, and computer technician/database developer in a small town - enjoying life at it’s best. I started having some pain in my arms and wrists, and my fingers started swelling. I figured I had carpal tunnel - if only that had been the case. I went in for carpal tunnel testing, and was referred to a rheumatologist. It was suspect I had this disease called scleroderma. I read the pamphlet, looked on line, and said - “I don’t have that!”. Oh yes I did. Within six months, every week something new, I went from swollen fingers to skin so hard I couldn’t be touched. Elbows/ arms I couldn’t straighten, knees I couldn’t bend, eyebrows so tight and lifted, pain, fatigue - (which I thought was an excuse for being lazy). My legs and hips were so hard and stiff I couldn’t hardly walk a block and had to use my hands to lift my feet to get them up on top of the curb. The swollen fingers contracted to claws. What do you do? In my case, lie to yourself and everyone around you and try to hide it. It was my fault because I wasn’t exercising enough and it would just go away. Pretty hard to hide, and it just wouldn’t go away. At the time, most rheumatologists did not want to take on scleroderma patients. I was lucky to have found a new sceroderma clinic at the University of Minnesota that accepted me. They put me on treatment and worked with my local doctors and Jamestown Regional Medical Center for physical rehab. GOOD NEWS!! Specialists and research are expanding and working for a cure. Please see the resources and doctors/facilities I have listed. There are more doctors and facilities that you can google. What now - over 10 Years Later… I’m 54 now. The effects of scleroderma and aging are challenging, but I still consider myself lucky. I still have all my fingers and toes, support of my family, fiance of 30 years, friends and coworkers, and my employer. Though the scleroderma was severe when I started the site, my health and physical ability has deteriorated even more and the scleroderma has become more active. I won’t be able to travel for any more trials at this point. I can no longer remain fulltime as I cannot full fill the duties of the position and my doctors say it is physically causing issues with my health, and I should not have pushed it so long. SO A NEW JOURNEY BEGAN... I completed the disability process and recorded my progress, information that had to be provided etc. on my Disability Page. I participated in the Cytori clinical trial designed to study the use of a patient’s own Adipose-Derived Regenerative Cells (ADRCs), prepared using the investigational Celution® Device, in the treatment of scleroderma affecting the hands and fingers. You can see an article of the results here, the trial is completed. I truly believe in this type of stem cell research. It is being tested for may applications, and as the technology gets perfected, I think the results will be amazing. Personally I did not see the results I was hoping for though I believe it did start off showing improvement and maybe slowed down the progression. The length of time a person has had the disease does affect the possible outcome of some trials. I see that some of them now require a person to have had the disease 5 or less years. I was in a trial for a drug to treat calcinosis in scleroderma at Stanford University. If you are interested they are still recruiting at clinicaltrials.gov click here for that particular trial. What is Scleroderma? Scleroderma, or systemic sclerosis, is a rare chronic connective tissue disease. The exact cause or causes of scleroderma are still unknown. It is known that scleroderma involves an overproduction of collagen. Currently, there is no cure for scleroderma. See the full Article at the Scleroderma Foundation Website The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. There are different types of the disease. I have Systemic scleroderma (systemic sclerosis). The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body. There are two major recognized patterns that the illness can take - diffuse or limited disease. In diffuse scleroderma, skin thickening occurs more rapidly and involves more skin areas than in limited disease. In addition, people with diffuse scleroderma have a higher risk of developing “sclerosis” or fibrous hardening of the internal organs. What causes scleroderma? The exact cause or causes of scleroderma are still unknown, but scientists and medical researchers are working hard to make those determinations. It is known that scleroderma involves an overproduction of collagen. Contact Me scleroderma@daktel.com
Searching clinicaltrials.gov
Screen of clinical trial information
“Scleroderma showed up and changed my life and my body in 6 months.”
Fast 6 month progression of scleroderma.
Nancy's Active Lifestyle before Scleroderma. Nancy's Active Lifestyle before Scleroderma. Nancy's Active Lifestyle before Scleroderma.
Participating in clinical trials for scleroderma and other diseases
Recording Disease Progression in Scleroderma
Dr Jerry Molitor University of Minnesota Scleroderma Specialist
Dr Daniel Furst Pacific Arthritis and UCLA Sclerodrma and Arthritis Specialist
Dr. Lorinda Chung Stanford University
Nancy Bader Scleroderma Diffuse Systemic Sclerosis 2019
2019
Dr. Amanda Lausch - Wound Clinic Jamestown Regional Medical Center

NEW! New and

Exciting News from

the World of

Scleroderma

Research

2019 National

Conference Video

Daniel Furst, M.D.,

University of

California, Los

Angeles, presented

"New & Exciting News from the World of Scleroderma Research" at the Scleroderma

Foundation's 2019 National Conference in Chicago, Illinois.

2018 Scleroderma

Conference Video.

Please watch this.

There is so much

new information

on what is now

known about

scleroderma, and

how fast research

is progressing.

THEY WILL FIND A

CURE!

Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis (RESOLVE-1) - Status Active No Longer Recruiting.
Mechanism of Action Video of Lenabasum
DISABILITY UPDATE - My disability was approved. I have updated the Disability Page with examples of info I provided on forms.
https://jrmcnd.com/nancy-bader-fighting-battle-scleroderma/?fbclid=IwAR07E987DHe2k9FXUOFCUplPixHWW-tyPYAhZTipUCeL7onDCANsg59H_9I

Site Overview

Hi My name is Nancy. I was diagnosed with Systemic Sclerosis (Scleroderma) over 10 years ago. I decided to create this website to promote awareness and hope- fully provide some valuable resources. Since I started this website my journey has now changed. Though the sclero- derma was severe when I started the site, my health and physical ability has deteri- orated even more and the scleroderma has become more active. I won’t be able to travel for any more trials at this point. I can no longer remain full-time as I can- not full fill the duties of the position and my doctors say it is physically causing issues with my health, and I should not have pushed it so long. SO A NEW JOURNEY BEGAN... I started the disability process and was approved. The process and steps are recorded on my Disability Page. You can view My Story here, and see the symptoms and progression of the disease as it affected me, but the goal of my site is to help those who have scleroderma or family and caregivers to have a quick start to good resources and/or physicians I have actually met. My personal goal was participating in clinical research studies, so hopefully better drugs, treatments, and ultimately a cure will be available for people diag- nosed with scleroderma. I participated in the Cytori STAR Trial, and another trial for calcinosis. I’ve met wonderful doctors and researchers who are dedicated to finding a cure and better treatments for this disease. Though my situation has changed, I encourage anyone who can to participate.

Recording Disease Progression

I think tracking the progression of the disease as it relates to you can be very beneficial for your care, your doctors in- formation, and research. Regretfully I did not keep a personal record when I was diagnosed with the disease. The kind of personal tracking I am talking about is a journal of weekly or monthly changes along with pictures (almost everyone has a smart phone). Since scleroderma is dif- ferent for everyone, how the disease manifests itself and progresses for each individual is valuable. The more information you record, the more complete the picture. Plus you will be providing information as it happens, instead of trying to recap it later.

Participating in Clinical Trials and

Info from Past Trials

If you have scleroderma and wish to participate in a trial, the best resource is www.clinicaltrials.gov . The site has the general search screen shown below, or you can select Advanced Search for more options to narrow it down. The quickest way is to type “SCLERODERMA” condition field, maybe with a few more keywords and click search. You will see results similar to below. The information provided includes a descrip- tion of the trial, if it is active or com- pleted, recruiting or not yet recording etc. If a trial is in progress you can view its history, if it is completed you can see the results of the trial. An excellent source of information.

Specialists and Resources

The Scleroderma Foundation website lists Specialists and Sclero- derma Centers. Below are specialists I have personally seen: Dr. Jerry Molitor - University of Minnesota I started seeing Dr. Molitor when I was first diagnosed and still see him as my spe- cialist. He is the specialist at the Scleroderma clinic at the University. Dr. Molitor was instrumental in providing treatment and physical ther- apy to help me regain my flexability and mobility to remain in the workforce. He is a caring expert, involved in research, and and lucky for me he is located in the mid- west since I am from North Dakota. Dr. Molitor and his staff have really gone to bat for me recently as my condition de- clined. They got a very promising drug called actemra approved thru insurance for me. I have had two infusions so far - Jan 2018 and Feb 2018. Dr. Daniel Furst - Pacific Arthritis - UCLA I met Dr. Furst in a clinical trial. He is a professor of medicine at UCLA Medical Center, an adjunct professor at the University of Washing- ton - Seattle, and a research professor at the University of Florence in Italy. He has prac- tices at the Arthritis Associates of Southern California, as well as the Seattle Rheumatology Associates in Seattle. Dr. Furst is a wealth of knowledge. He is in- volved in the Scleroderma foundation, research studies, and has written a book on scleroderma. He travels the states and other countries working with and training specialists. I think anyone who has sclero- derma can benefit from making an appointment and meeting Dr. Furst whether you are able to continue care with him or not. I was in another study with Dr. Furst and am now seeing him as a patient. Amanda Lausch - Wound Clinic Jamestown Regional Medical Center Amanda is a wound & hyper- baric specialist at the Jamestown Regional Medical Center Wound Clinic in Jamestown, ND, which is a Healogics facility. She has an extensive knowledge of scleroderma and has been been treating my finger ulcers, and remov- ing calcinosis promoting good tissue growth and healing in my fingers and hands. Her care has been finger-saving for me, with proactively promoting healing and minimizing any risk of infection. Dr. Lorinda Chung - Stanford University I have not met Dr. Chung per- sonally, but have listed her here as she is the head of the trial for the treatment for cal- cinosis I was in. WEB RESOURCES - Scleroderma Foundation Scleroderma News ClinicalTrials.gov Scleroderma Patient-centered Interven- tion Network (SPIN)

My Journey with Scleroderma

Prior to 10 years ago I was a runner, snow skier, water skier, golfer, scuba diver, and computer technician/database developer in a small town - enjoying life at it’s best. I started having some pain in my arms and wrists, and my fingers started swelling. I figured I had carpal tunnel - if only that had been the case. I went in for carpal tunnel testing, and was referred to a rheumatologist. It was suspect I had this disease called scleroderma. I read the pamphlet, looked on line, and said - “I don’t have that!”. Oh yes I did. Within six months, every week something new, I went from swollen fin- gers to skin so hard I couldn’t be touched. Elbows/ arms I couldn’t straighten, knees I couldn’t bend, eyebrows so tight and lifted, pain, fatigue - (which I thought was an excuse for being lazy). My legs and hips were so hard and stiff I couldn’t hardly walk a block and had to use my hands to lift my feet to get them up on top of the curb. The swollen fingers contracted to claws. What do you do? In my case, lie to yourself and everyone around you and try to hide it. It was my fault because I wasn’t exercising enough and it would just go away. Pretty hard to hide, and it just wouldn’t go away. At the time, most rheumatologists did not want to take on scleroderma patients. I was lucky to have found a new sceroderma clinic at the University of Minnesota that accepted me. They put me on treatment and worked with my local doctors and Jamestown Regional Medical Center for physical rehab. GOOD NEWS!! Specialists and research are expanding and working for a cure. Please see the resources and doctors/facilities I have listed. There are more doctors and facilities that you can google. What now - over 10 Years Later… I’m 54 now. The effects of scleroderma and aging are challenging, but I still con- sider myself lucky. I still have all my fingers and toes, support of my family, fiance of 30 years, friends and cowork- ers, and my employer. Though the scleroderma was severe when I started the site, my health and physical ability has deteriorated even more and the scle- roderma has become more active. I won’t be able to travel for any more trials at this point. I can no longer remain full- time as I cannot full fill the duties of the position and my doctors say it is physi- cally causing issues with my health, and I should not have pushed it so long. SO A NEW JOURNEY BEGAN... I com- pleted the disability process and recorded my progress, information that had to be provided etc. on my Disability Page. I participated in the Cytori clinical trial designed to study the use of a patient’s own Adipose-Derived Regenerative Cells (ADRCs), prepared using the investiga- tional Celution® Device, in the treatment of scleroderma affecting the hands and fingers. You can see an article of the re- sults here, the trial is completed. I truly believe in this type of stem cell research. It is being tested for may applications, and as the technology gets perfected, I think the results will be amazing. Person- ally I did not see the results I was hoping for though I believe it did start off show- ing improvement and maybe slowed down the progression. The length of time a person has had the disease does affect the possible outcome of some trials. I see that some of them now require a person to have had the disease 5 or less years. I was in a trial for a drug to treat calci- nosis in scleroderma at Stanford University. If you are interested they are still recruiting at clinicaltrials.gov click here for that particular trial. What is Scleroderma? Scleroderma, or systemic sclerosis, is a rare chronic connective tissue disease. The exact cause or causes of scleroderma are still unknown. It is known that scle- roderma involves an overproduction of collagen. Currently, there is no cure for scleroderma. See the full Article at the Scleroderma Foun- dation Website The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifesta- tions of the disease. There are different types of the disease. I have Systemic scleroderma (systemic sclerosis). The changes occurring in sys- temic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs be- come hard and fibrous, causing them to function less efficiently. The term sys- temic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body. There are two major recognized patterns that the illness can take - diffuse or limited disease. In dif- fuse scleroderma, skin thickening occurs more rapidly and involves more skin areas than in limited disease. In addition, people with diffuse scleroderma have a higher risk of developing “sclerosis” or fibrous hardening of the internal organs. What causes scleroderma? The exact cause or causes of scleroderma are still unknown, but scientists and medical researchers are working hard to make those determinations. It is known that scleroderma involves an over- production of collagen. Contact Me scleroderma@daktel.com
Searching clinicaltrials.gov
Screen of clinical trial information
Participating in clinical trials for scleroderma and other diseases
Recording Disease Progression in Scleroderma
Dr Jerry Molitor University of Minnesota
Dr Daniel Furst Pacific Arthritis and UCLA
Dr. Amanda Lausch - Wound Clinic Jamestown Regional Medical Center
Dr. Lorinda Chung Stanford University
“Scleroderma showed up and changed my life and my body in 6 months.”
Fast 6 month progression of scleroderma.

NEW! 2018

Scleroderma

Conference

Video. Please

watch this.

There is so

much new

information

on what is now known about scleroderma, and

how fast research is progressing. THEY WILL

FIND A CURE!

Nancy's Active Lifestyle before Scleroderma. Nancy's Active Lifestyle before Scleroderma. Nancy's Active Lifestyle before Scleroderma.
BY NANCY BADER BY NANCY BADER
A SCLERODERMA JOURNEY
Trial to Evaluate Efficacy and Safety of Lenaba- sum in Diffuse Cutaneous Systemic Sclerosis (RESOLVE-1) - Status Active No Longer Recruiting.
Mechanism of Action Video of Lenabasum
DISABILITY UPDATE - My disability was approved. I have updated the Disability Page with examples of info I provided on forms.
Nancy Bader Fighting the battle of Scleroderma - an article by Jamestown Regional Medical Center Nancy Bader Scleroderma Diffuse Systemic Sclerosis 2019
2019

NEW! New and Exciting News from the World

of Scleroderma Research 2019

National Conference Video

Daniel Furst,

M.D.,

University of

California,

Los Angeles,

presented

"New &

Exciting

News from the World of Scleroderma

Research" at the Scleroderma Foundation's

2019 National Conference in Chicago, Illinois.