The Reality of Living With Scleroderma

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For people living with scleroderma, daily life can be extremely painful. The condition affects every aspect of their lives. To date, there is no cure for scleroderma, only medications and treatments that address some of the symptoms of the disease.

Could a topical paste prevent skin hardening in scleroderma patients? Find out more. 

In this emotional video Crystal Guzman shares her reality of the disease. Eleven months after diagnosis, Crystal’s scleroderma has progressed so much that the skin tightening is drastically affecting her movement. She’s not able to straighten her legs and her torso, which makes walking extremely difficult and very painful. In addition, she cannot raise her arms or bring her hands to her face so is now unable to feed herself.

Find out about seven common misconceptions about scleroderma.

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

 

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2 comments

  1. Kristi Bell Unruh says:

    I also suffer from this disease. Diagnosed in 2010. Knew something was wrong in 2008. Even before that, as a mom and pop motel owner, my body was in extreme pain after having to take care of our motel. Anyway, I’ve learned to avoid bubbly linguists. Water makes me feel sick and eating vegetables is a really good thing. I also have a dog who has to be exercised. We walk in sand so if/when I fall it doesn’t hurt. This keeps me moving and hopefully from turning to stone. I also use cvs for the muscle/tendon tightening. Actually works really well. I also smoke my homegrown daily. This causes me to cough up the stuff that collects in the gut.?Get rid of it. Pulmonologists tell me to keep up what I am doing. My breathing tests have been sustaining themselves for the last few years. Natural is what I try to do. After reading others who try to get off the prescribed drugs. Thankfully not for me at this time.

  2. My name is Julie I have crest syndrome. the tigtening of my hands is progressing, sweeling of my hands make it difficult to pick up objects because they numb and when they red it feels like acid being poured on my hands and pain is aweful. Amlodipine 10mg, cyclobenzaprine, other meds and still the pain from raynaud’s makes doing dishes so sore my hands looked burned even wearing gloves. i can not stick my hans in warm, cold, hot water it hurts so bad. it now has moved up my body and feels like i am being hit by darts in the bath. gabapentin 600mg.this disease is aweful, no family support, thank god for great doctors, counselors. i want people to know wounds will take longer to heal, wear gloves outside when its cold. you have to do your own research. I found out the scleroderma is linked to my acdf as titanium is toxic and has been known to cause autoimmune disease which i hope to have removed.

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