What is Scleroderma? Quick Tips for Managing Scleroderma

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Photo © Hadis Safari 

 

June is Scleroderma Awareness Month, and today, June 29th marks World Scleroderma Day.

 

What is Scleroderma?

Scleroderma is a rare connective tissue disease that can affect skin, joints, tendons and internal organs. According to Hopkins Scleroderma, it is an autoimmune, rheumatic, and chronic disease that affects the body by hardening connective tissue. The connective tissue is made of many kinds of proteins.  Among them is collagen of the skin. 

 

Who is affected by Scleroderma? 

2.5 million people worldwide have Scleroderma, and 12,000 people in the U.K. have been diagnosed. This rare disease mainly affects women between the ages of 25 to 55, while African, American, and Native American women have the highest rate of being diagnosed with Scleroderma. Although Scleroderma is not genetic, there are responsive genes which one can carry.

 

What types of Scleroderma are there?

There are several types of Scleroderma disease that fall under the category or Localized Scleroderma or Systemic Scleroderma. The common factor of any Scleroderma patient is that hardening of the skin is involved. What are the differences you ask? 
  
Localized; Linear Scleroderma, Morphea Scleroderma, and Generalized Morphea has involvement of the skin, primarily seen on the hands, feet, and skin, and muscle underneath the skin. 

Systemic; Limited Cutaneous Scleroderma, Diffused Cutaneous Scleroderma, Sine Scleroderma, depending on the type, can cause skin involvement of the hands, feet, and face, and develop into the blood vessels, joints, muscles, nerves, and ligaments, and major internal, visceral organs such as the heart, lungs, intestines, and esophagus, kidneys. 

Systemic involvement often has many other illnesses attached to Scleroderma from vascular diseases such as Raynaud's, circulatory system with pulmonary arterial hypertension, other rheumatic disorders such a Sjogren's, damage to the GI tract with dysphagia, small bacterial overgrowth, the endocrine system with kidney failure, and more. Scleroderma can virtually impact many stems and functions of the body.

In a nutshell, some scleroderma is extremely visible. Other forms, and many symptoms of Scleroderma are not visible. Many people could look at a Scleroderma patient and not think they have this rare disease. 

 

How do you Manage Scleroderma?

Scleroderma begins as a chronic disease but can end up fatal. Today, with proper medical guidance and discipline, living with this disease has more hope. The expectation of one's survival and quality of life with scleroderma can not only depend on the initial diagnosis and progression but also the patient's management of the painful disease itself.

The truth is that there are many tools to fight scleroderma. The issue can lie in accessibility. Many scleroderma patients are nowhere near the proper medical care needed to fight scleroderma. It's an expensive disease, and while some are luckier than others, we thought we'd share tips on how to manage Scleroderma in the most affordable and convenient way we know how.  

If you have a loved one or patient with Scleroderma, know to encourage them while having patience and compassion.  

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