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More Funds To Research a Cure for Scleroderma

Public Comments (6,972)
  • May 4th, 2017
    Kelly K. from Kingston, PA writes:
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    I am one suffering from Systemic Scleroderma. We all need help with funding.
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  • May 4th, 2017
    Donna C. from York, PA signed.
  • May 4th, 2017
    Debra S. from New York, NY signed.
  • May 4th, 2017
    Someone from Elmhurst, NY writes:
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    Scleroderma has debilitated me to the point of total exhaustion. Everyone says I look great but inside my body is a wreck. More funds are needed to find a cause & cure for this horrible disease.
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  • May 2nd, 2017
    Juanice H. from Irving, TX signed.
  • May 2nd, 2017
    Raymond N. from Janesville, WI writes:
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    I jave SCLERODERMA and not a day goes by that I dont wish for a cure or at least s control over this horrible monster slowly growing inside and outside my body. Please fund as much resrarch as possible in all releatef fields to stomp out this rare diese.
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  • May 2nd, 2017
    Raymond N. from Janesville, WI writes:
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    I jave SCLERODERMA and not a day goes by that I dont wish for a cure or at least s control over this horrible monster slowly growing inside and outside my body. Please fund as much resrarch as possible in all releatef fields to stomp out this rare diese.
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  • May 2nd, 2017
    Jennifer S. from Conneaut, OH signed.
  • Apr 28th, 2017
    Someone from Montgomery City, MO writes:
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    As a person who has Systemic Scleroderma, I can tell you we DESPERATELY need help!
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  • Apr 28th, 2017
    Catherine T. from Marcus Hook, PA signed.
  • Apr 28th, 2017
    Catherine T. from Marcus Hook, PA signed.
  • Apr 20th, 2017
    Patricia S. from Richmond, CA signed.
  • Apr 20th, 2017
    Patricia S. from Richmond, CA signed.
  • Apr 20th, 2017
    Marzena Z. from Riverhead, NY signed.
  • Apr 20th, 2017
    Monica M. from El Cerrito, CA signed.
  • Apr 19th, 2017
    Joe e. from Tillamook, OR signed.
  • Apr 19th, 2017
    Marta S. from Riverhead, NY signed.
  • Apr 19th, 2017
    Ione S. from Caldwell, ID writes:
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    This is such a horrible disease. Not much research done to treat it please help those people afflicted by it.
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  • Apr 19th, 2017
    Ione S. from Caldwell, ID writes:
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    This is such a horrible disease. Not much research done to treat it please help those people afflicted by it.
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  • Apr 19th, 2017
    Violetta K. from Riverhead, NY signed.
  • Apr 19th, 2017
    Zacharewicz I. from Riverhead, NY signed.
  • Apr 12th, 2017
    Annette A. from Raleigh, NC writes:
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    My Battle With Scleroderma i was diagnosed with Scleroderma in 2016 Prior to my diagnosis, i had pain in my joints were so sore; it was extremely painful for me to move around. I was in the hospital for 2 weeks then refferald too a Rheumatologist, who diagnosed me. With Scleroderma And give me and lot of life chabging information in one day.The Rheumatologist told me¹ that There is no Cure for scleriderme that we just give yiu pills treat to make me comfortable. This is a journey¹ I never asked for. All i want is a cure!!! s,
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  • Apr 12th, 2017
    Someone from Muskegon, MI writes:
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    In honor of my Aunt who fought this painful disease for too many years.
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  • Apr 12th, 2017
    Amanda B. from Byron Center, MI signed.
  • Apr 12th, 2017
    Jen H. from Byron Center, MI signed.
  • Apr 12th, 2017
    Kimberly B. from Byron Center, MI writes:
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    I sign this petition in honor of my Aunt, my provider, my protector, my heart. She fought a tough battle for 17 years and just three short years ago, went on to find peace from this disease. Finding a cure for Scleroderma would be a true blessing.
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  • Apr 12th, 2017
    Susan O. 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. By Susan Osten
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  • Apr 12th, 2017
    Jeanette W. from Sisters, OR writes:
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    This horrible disease has almost killed me twice. The last time, I died 5 times. My husband performed CPR on me until paramedics arrived. I was on life support in Bend, Oregon for 3 days before Legacy Emanuel Hospital "ECMO" team arrived from Portland, Oregon. Dr. Sandra Wanek & her team of nurses flew me to Portland, Oregon and their main concern was keeping me alive. I was in a coma for 55 days, was on every type of life support machine, had an emergency tracheotomy and colostomy surgery because my body went into organ failure. I had to re-learn how to walk, talk, eat & think correctly. I was in Legacy Emanuel hospital 99 days. If it wasn't for Dr. Sandra Wanek & her team, I would not be here today. We need more funding to help find a cure.
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  • Mar 3rd, 2017
    Lindsay D. from Bode, IA writes:
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    Please help us with funding for this horrible disease.
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  • Feb 12th, 2017
    Dina M. from Albany, NY writes:
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    Please please find cure
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  • Jan 23rd, 2017
    Someone from South Range, WI signed.
  • Nov 28th, 2016
    Shelby G. from Fort Lauderdale, FL writes:
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    Please add more funds to scleroderma research.
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  • Nov 13th, 2016
    Suzie Y. from Hoboken, NJ signed.
  • Nov 10th, 2016
    Melissa v. from Tucson, AZ signed.
  • Sep 30th, 2016
    Nydia R. from San Tan Valley, AZ signed.
  • Sep 30th, 2016
    Deanne W. from Lemon Grove, CA signed.
  • Sep 16th, 2016
    Someone from Vidor, TX signed.
  • Sep 16th, 2016
    Someone from Byron, GA signed.
  • Sep 12th, 2016
    Someone from Westland, MI signed.
  • Aug 21st, 2016
    Someone from Olin, NC signed.