Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: Wilhelmina, 35-44 Female (Patient) Published: October 23

Eight years ago I was diagnosed with scleroderma, I was never ill never even had a real flu, then suddenly my fingers started to get really sensitive, I couldn't tie my shoe laces. I went to a specialist and he found out I had scleroderma. I thanked him for the medication and left, not knowing what to do next. I went looking for a licensed doctor who was also a naturopath, he did a very simple hair analysis and we found out I had too much, mercury, lead, silver arsenicum and tin in my body. After a detox of three months with DMSA pills and removing my amalgam my scleroderma stabilized. My fingers and my toes are a bit stiff but for the rest I can do everything. I hope I can help other people with my story.

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Comment from: Brenna, 35-44 Male (Caregiver) Published: September 30

My dad has scleroderma, and it has attacked his kidneys. My auntie just died from scleroderma a year ago. The doctor who diagnosed my dad was shocked to hear that his sister also had the disease because it is rare to be in the same family, such as brother and sister. Seeing this disease attack my dad so drastically puts me in shock because my dad was always so healthy and hardly ever got sick. The physical effects it has had on my dad are: loss of muscle and weight, hardening and tightening of the skin, joint pain, struggling to breathe, blotches on his skin from kidney problems, purple hands and feet, and a huge change in diet to survive better and almost daily blood tests.

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Comment from: Mary, 55-64 Female (Patient) Published: September 30

I have had scleroderma since I was 12 years old. I am now a 59-year-old female. It started with a small, white patch underneath my right eye. Over the 47 years, it has progressed down the right side of my face, my arm, leg, back, and stomach. I always seem to be able to tell when it spreads a little more. It's as though it has become live and itches.

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Comment from: Annie, 35-44 Female (Caregiver) Published: September 25

Hi, I'm from the Philippines. My 44 year old female cousin (from my mother's side) just died last week of scleroderma. She was diagnosed in November last year. The hardening of her skin and its spread throughout her body was fast and I guess the doctors here have no idea as to mode of treatment.

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Comment from: ripeberry4, 65-74 Female (Caregiver) Published: September 25

My mother has scleroderma and she has had two fingers cut off is this usually what happens in the later stages

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Comment from: Lyndsey, 25-34 Female (Patient) Published: August 29

I am 26-year-old white female who was diagnosed with UMCTD with a leaning toward scleroderma because my first symptoms were finger swelling along with Raynaud's disease. I spent a year in pain before I saw a doctor, and initially the doctors said my disease was progressing rapidly. I had a finger ulcer and had two pulmonary effusions, besides the debilitation of joint pain. I wanted to write however, to let people know that it is possible to deal with this disease-and to find the right doctor. My doctor has made it possible for me to stay off as many medications as possible and to give me back my life. It has been almost a year since I have had any serious complications with my disease, and I am working again and working on a graduate degree. I know that there is always a possibility of it getting worse, but all I prayed for was for it to be manageable, and I believe that if you get the right doctor and take an active part in your healing that it is ... manageable.

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Comment from: Joan, 65-74 Female (Patient) Published: August 29

I got Raynaud's disease in 2001, and now I have the lung disease scleroderma. I'm getting the chemotherapy drug Cytoxan. I will get this until December, and then I will be tested again. If it doesn't work I will be going to Boston for an experimental drug. I have been on oxygen for a year and also have been on different drugs.

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Comment from: Kenneth , 55-64 Male (Patient) Published: August 08

It has been years to find out that scleroderma is what's wrong with me. I've lost feeling in my feet; my fingers are numb, red and painful in the morning. I have trouble swallowing food at times. I have terrible knee and leg pain. I'm very tried most of the time.

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Patient Comments

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Scleroderma - Symptoms and Signs Question: What are your scleroderma symptoms and signs?
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you, a friend, or relative have? Please share your story.

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