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3 months ago
Susan O. from Ellenton, FL writes:
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My Mom's Battle With Scleroderma January 4, 2013 at 11:17pm My mom was diagnosed with Scleroderma in 1995. Prior to her diagnosis, my mom’s joints were so sore; it was extremely painful for her to move around. She was referred by her primary physician to a Rheumatologist, who diagnosed her with Scleroderma and prescribed Prednisone, 40 mg. The Rheumatologist told mom that she could live three years, ten years or even sixteen years. Some of mom's early symptoms of Scleroderma were little red dots on the palms of her hands, very stiff joints, weight loss and frailty. Very soon after she began taking the Prednisone, she was up and walking like there was nothing wrong with her. In lei of mom’s improved condition, the doctor was able to gradually decrease the dose of Prednisone to 5 mg. ************************************************************************** Mom functioned very well for a few years taking only 5 mg. of Prednisone; although, as the years went by, mom developed more significant symptoms of Scleroderma.  A major Artery in the right side of her neck was 70% blocked…she had surgery to remove the blockage. The left side was 30% blocked but it did not warrant surgery.  Mom also had to have surgery on one of her fingers to remove a bone that was growing through the tip of her finger. Her fingers hardened and turned white at the least bit of cold. She began to develop ulcers on her finger tips.  Also, her digestive tract started to give her severe problems.   *************************************************************************  Approximately, one year before mom passed away my dad began to notice mom was having some unusual symptoms.  Mom and dad were driving home from Kentucky and my dad noticed that my mom was talking but she was not making any sense and then, after a few minutes, she was back to herself. After a few of those episodes, she began to have Seizures so the doctor prescribed Dilanton to control the Seizures.  The doctor could not get the Dilanton to the proper level in mom's bloodstream and therefore, the doctor was constantly taking blood samples and raising the dosage. My dad became frustrated so he took a list of mom’s medications to their neighborhood Pharmacist seeking help. The Pharmacist was very helpful; he informed my dad that you cannot take supplemental Calcium and Dilanton at the same time because it greatly reduces the absorption of the Dilanton in the bloodstream.  Dad gave this information to the doctor, who in turn, made the necessary changes and the Dilanton in mom’s bloodstream reached the proper level.  The Seizures stopped but unfortunately, mom fell down walking from the car to the beauty salon. She was in extreme pain so an ambulance was called to take her to the Emergency Room. They x-rayed her hip and the doctor said there were no broken bones and he released my mom to go home.   ************************************************************************* How my dad put my mom into the car to take her home, I don't know. When my parents arrived at their house, mom could not get out of the car…every time my Dad tried to move her, she would scream.  My dad phoned me to come over and help him get mom out of the car. We had to bring out a kitchen chair for her to sit in and put a little board that had wheels on it under her feet.  We scooted her towards the house. It took us over an hour to get mom from the car into the house. My sister came over the next morning only to find that mom had not moved and inch all night. My dad called the ambulance that morning to take mom back to the Emergency Room. When the ambulance arrived they put mom on a stretcher. During this process, mom had a severe Seizure which was triggered by the extreme pain she was in. In the Emergency Room, the technician took another x-ray of her hip and they found that mom's hip was indeed, broken. Shortly, thereafter, mom was scheduled for hip surgery. All went well…mom’s hip healed in no time and she left the hospital to go to a Nursing Home/Rehabilitation Center for rehab.  When mom finished her rehabilitation; she was released to go home.   At home, mom would walk with a walker, to the living room and back to the bedroom. On trips outdoors, she would use her wheelchair. Mom was never able to walk by herself.  Several months went by and we noticed that the tip of her big toe, on her left foot was starting to turn black. As it worsened, she  went to see several doctors…they couldn’t do anything to help her and she was referred to a surgeon. The surgeon did a Doppler Test on her legs and he found that there was no blood circulation in either leg. The surgeon recommended that mom should have her left leg amputated, below the knee. The surgery was performed and once again, mom went into rehab and then home.  After several weeks, Gangrene set into her stump and the big toe, on her right foot started turning black. Once again, we consulted her surgeon, who recommended amputating both of her legs above the knee. After the surgery, he informed us that my mom had approximately, a year and six months to live due to Scleroderma and her age.   ****************************************************************************** When they took mom to ICU after surgery, I watched my mom scream for help because she was in extreme pain.  She just went through the most painful surgery a person can have. Where was the Morphine?  I asked the attending nurse in ICU to start the antibiotics ASAP. I told her my mom had Scleroderma and was subject to infection.  The nurse told me the surgeon had not yet written the order.  The antibiotics were started about 30 minutes after they took her to her room. While mom was in the hospital, recuperating from the double amputation, she fought one infection after the other.  Some of the stitches broke in her left stump the day after surgery and the surgeon would not stitch it again.  He said he would have to cut more of her leg in order to stitch it again and he didn’t think that was wise.  It left a gaping wound that wouldn’t heal and most of the time, the stump was not bandaged.  I believe it was during this time, mom contracted MRSA in her left stump. (Methicillin-resistant Staphylococcus aureus (MRSA) is a type (strain) of staph bacteria that does not respond to some antibiotics that are commonly used to treat staph infections) Mom was administered antibiotics…the antibiotics could not kill the infection. After a few days, we were informed by the doctor that the MRSA had colonized, meaning that there was no cure for the staph infection and because of this, mom's health would continue to deteriorate.    **********************************************************************************   Mom passed away on April 12, 2011, a week and a half after she came home from the hospital. My mom lived 16 years with Scleroderma.   NOTE: This is a narrative of my experience and no recommendations are given or implied. Copyright © 2013 by Susan Heath Barrington
3 months ago
Someone from Ellenton, FL writes:
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My Mom's Battle With Scleroderma My mom was diagnosed with Scleroderma in 1995. Prior to her diagnosis, my mom’s joints were so sore; it was extremely painful for her to move around. She was referred by her primary physician to a Rheumatologist, who diagnosed her with Scleroderma and prescribed Prednisone, 40 mg. The Rheumatologist told mom that she could live three years, ten years or even sixteen years. Some of mom's early symptoms of Scleroderma were little red dots on the palms of her hands, very stiff joints, weight loss and frailty. Very soon after she began taking the Prednisone, she was up and walking like there was nothing wrong with her. In lei of mom’s improved condition, the doctor was able to gradually decrease the dose of Prednisone to 5 mg. ************************************************************************** Mom functioned very well for a few years taking only 5 mg. of Prednisone; although, as the years went by, mom developed more significant symptoms of Scleroderma. A major Artery in the right side of her neck was 70% blocked…she had surgery to remove the blockage. The left side was 30% blocked but it did not warrant surgery. Mom also had to have surgery on one of her fingers to remove a bone that was growing through the tip of her finger. Her fingers hardened and turned white at the least bit of cold. She began to develop ulcers on her finger tips. Also, her digestive tract started to give her severe problems. ************************************************************************* Approximately, one year before mom passed away my dad began to notice mom was having some unusual symptoms. Mom and dad were driving home from Kentucky and my dad noticed that my mom was talking but she was not making any sense and then, after a few minutes, she was back to herself. After a few of those episodes, she began to have Seizures so the doctor prescribed Dilanton to control the Seizures. The doctor could not get the Dilanton to the proper level in mom's bloodstream and therefore, the doctor was constantly taking blood samples and raising the dosage. My dad became frustrated so he took a list of mom’s medications to their neighborhood Pharmacist seeking help. The Pharmacist was very helpful; he informed my dad that you cannot take supplemental Calcium and Dilanton at the same time because it greatly reduces the absorption of the Dilanton in the bloodstream. Dad gave this information to the doctor, who in turn, made the necessary changes and the Dilanton in mom’s bloodstream reached the proper level. The Seizures stopped but unfortunately, mom fell down walking from the car to the beauty salon. She was in extreme pain so an ambulance was called to take her to the Emergency Room. They x-rayed her hip and the doctor said there were no broken bones and he released my mom to go home. ************************************************************************* How my dad put my mom into the car to take her home, I don't know. When my parents arrived at their house, mom could not get out of the car…every time my Dad tried to move her, she would scream. My dad phoned me to come over and help him get mom out of the car. We had to bring out a kitchen chair for her to sit in and put a little board that had wheels on it under her feet. We scooted her towards the house. It took us over an hour to get mom from the car into the house. My sister came over the next morning only to find that mom had not moved and inch all night. My dad called the ambulance that morning to take mom back to the Emergency Room. When the ambulance arrived they put mom on a stretcher. During this process, mom had a severe Seizure which was triggered by the extreme pain she was in. In the Emergency Room, the technician took another x-ray of her hip and they found that mom's hip was indeed, broken. Shortly, thereafter, mom was scheduled for hip surgery. All went well…mom’s hip healed in no time and she left the hospital to go to a Nursing Home/Rehabilitation Center for rehab. When mom finished her rehabilitation; she was released to go home. At home, mom would walk with a walker, to the living room and back to the bedroom. On trips outdoors, she would use her wheelchair. Mom was never able to walk by herself. Several months went by and we noticed that the tip of her big toe, on her left foot was starting to turn black. As it worsened, she went to see several doctors…they couldn’t do anything to help her and she was referred to a surgeon. The surgeon did a Doppler Test on her legs and he found that there was no blood circulation in either leg. The surgeon recommended that mom should have her left leg amputated, below the knee. The surgery was performed and once again, mom went into rehab and then home. After several weeks, Gangrene set into her stump and the big toe, on her right foot started turning black. Once again, we consulted her surgeon, who recommended amputating both of her legs above the knee. After the surgery, he informed us that my mom had approximately, a year and six months to live due to Scleroderma and her age. ****************************************************************************** When they took mom to ICU after surgery, I watched my mom scream for help because she was in extreme pain. She just went through the most painful surgery a person can have. Where was the Morphine? I asked the attending nurse in ICU to start the antibiotics ASAP. I told her my mom had Scleroderma and was subject to infection. The nurse told me the surgeon had not yet written the order. The antibiotics were started about 30 minutes after they took her to her room. While mom was in the hospital, recuperating from the double amputation, she fought one infection after the other. Some of the stitches broke in her left stump the day after surgery and the surgeon would not stitch it again. He said he would have to cut more of her leg in order to stitch it again and he didn’t think that was wise. It left a gaping wound that wouldn’t heal and most of the time, the stump was not bandaged. I believe it was during this time, mom contracted MRSA in her left stump. (Methicillin-resistant Staphylococcus aureus (MRSA) is a type (strain) of staph bacteria that does not respond to some antibiotics that are commonly used to treat staph infections) Mom was administered antibiotics…the antibiotics could not kill the infection. After a few days, we were informed by the doctor that the MRSA had colonized, meaning that there was no cure for the staph infection and because of this, mom's health would continue to deteriorate. ********************************************************************************** Mom passed away on April 12, 2011, a week and a half after she came home from the hospital. My mom lived 16 years with Scleroderma. NOTE: This is a narrative of my experience and no recommendations are given or implied. Copyright © 2013 by Susan Heath Osten
3 months ago
Someone from Rawson, OH writes:
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Scleroderma Warrior
3 months ago
Ashley A. from Raleigh, NC writes:
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My mother has scleroderma and I've noticed everyday is a struggle for her and she still is and I love her.
3 months ago
Constance T. from Ocoee, FL writes:
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I sign this petition in hopes of more funds being provide for Scleroderma research.
3 months ago
Annette A. from Raleigh, NC writes:
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Scleroderma is a life-threatening autoimmune disease that attacks the body's own tissues and is often progressive and sometimes fatal. Scleroderma damages the kidneys, lungs, heart, esophagus, gastrointestinal tract and can Cas skin damages. There is no cure for Scleroderma as yet but medications are prescribed for the symptoms of Scleroderma. Most of us look healthy on the outside while we are very sick or even hurting on the inside.
3 months ago
Denise S. from Fredericksburg, VA writes:
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I have Scleroderma and this disease has drastically changed my life. I spend a large part of my time going to doctor's and having tests run. Scleroderma is a daily battle. I have lost two friends to this hideous disease!! Please vote to provide more funds for Scleroderma research!!
3 months ago
Someone from Fredericksburg, VA writes:
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More funds have to be allocated for research!
3 months ago
Sophia R. from Fredericksburg, VA signed.
3 months ago
Someone from Columbia, TN writes:
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We need a cure!
3 months ago
Brenda R. from Spotsylvania, VA writes:
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I have Scleroderma, and this is a life threatening disease with no cure ! It can attack the internal organs, so you look fine on the outside, leaving people to say " But you don't look sick " With all the symptoms that go along with the disease , you need a lot of med's and some of those are very Expensive ! Plus there is a lot of Doctor appointments and Lab work . Also I have lost two friends to this horrible disease . Please vote for funds to provide more research ...... Thank you !
3 months ago
Deborah A. from Fredericksburg, VA writes:
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My sister has scleroderma and it is a daily battle. It is a brutal disease with no cure. I have met and come to care for others who suffer with this disease. There is so little known about this disease and the need for funds to further research is great. There is also a great need to increase public awareness of this disease. When my sister tells someone she has scleroderma most people have never heard of it. For the thousands of people fighting this disease it is devastating and tragic. PLEASE vote for more funding.
3 months ago
Tonya H. from Land O Lakes, FL signed.
3 months ago
Sanford O. from Oceanside, CA signed.
3 months ago
Jon D. from Buckeye, AZ writes:
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Please spread the word for awareness.
3 months ago
Geneva D. from Kent, WA writes:
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My son is suffering from this disease. Please help to find a cure.
3 months ago
Someone from Hemet, CA signed.
3 months ago
Jacqueline D. from Spotsylvania, VA writes:
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A dear friend is suffering with this horrible disease. Please direct more funds towards this research to find a cure.
3 months ago
Olive S. from Fredericksburg, VA signed.
just now
Melissa v. from Tucson, AZ signed.
November 10, 2016
Donna G. from Tucson, AZ writes:
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Please help with research to help find a cure!
November 10, 2016
Phyllis S. from Tucson, AZ writes:
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We need more research to find a cure.
2 months ago
Nora R. from Gainesville, TX writes:
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Please help us find a cure.. ????????????
2 months ago
Gina Y. from Grapevine, TX signed.
2 months ago
cathy w. from Danville, VA writes:
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Please help the many scleroderma suffers innocent of this disease it is one that is horrible and infect you in many different ways and would appreciate your contribution and help that you could give us we need you please help thank you Cathy work
2 months ago
Wendy Z. from Maple Lake, MN signed.
2 months ago
Someone from Amityville, NY writes:
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Help for Sclaraderma will be links for many other diseases. We are many mothers and fathers daughters and sons that miss out on working in the prime of our careers and often living. Please continue to support health research.
2 months ago
Todd C. from Cincinnati, OH writes:
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Please provide funds as needed for this disease, its unknown to so many, yet effects so many. The existing organizations need help and do amazing work and provide valuable information. There is hope with research! #ERICASTRONG
2 months ago
Jacqueline G. from Kalamazoo, MI signed.
2 months ago
Someone from Roseville, CA signed.
2 months ago
Nancy D. from Essexville, MI writes:
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I have been living with this disease for 12 years, I hope I can stay alive long enough for a cure!
2 months ago
Jon D. from Buckeye, AZ writes:
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More research is needed
2 months ago
Jon D. from Buckeye, AZ writes:
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More research is needed
2 months ago
Renelle H. from Poneto, IN writes:
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Research is very much needed!!!
2 months ago
Diane C. from Waveland, IN writes:
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More research is so needed to cure this multi-faceted/systemic/debilitating/chronic/sometimes terminal disease!
2 months ago
Doug C. from Cincinnati, OH signed.
2 months ago
Emily S. from Decatur, IN signed.
2 months ago
Someone from Cascade, WI signed.
2 months ago
Someone from Grand Ledge, MI writes:
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I lost my cousin to Scleroderma. He was in constant, terrible pain. We need more money for research.
2 months ago
Susan R. from Venice, FL signed.