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The Complete Beginner's Guide to Scleroderma

There are around 80 Autoimmune Diseases in the world. Autoimmune diseases occur when the immune system decides that healthy cells are foreign and attack the cells. In the United States, up to 50 million people are affected by autoimmune diseases (1).

Some of the widely known autoimmune diseases are Crohn’s disease (inflammation of the gastrointestinal wall) and Grave’s disease (a thyroid disorder). But a few autoimmune diseases remain unfamiliar by many. Scleroderma is one of the unrecognized autoimmune diseases.

Scleroderma means hardening of the skin. In extreme cases, the autoimmune disease can affect the internal organs. There are two main types of Scleroderma, localized and systemic.

Image Credit Robb Cohan/Scleroderma.org
Localized Scleroderma only affects the skin. An excessive amount of collagen builds up in the body and hardens the outer layer of skin (3). Localized Scleroderma is separated into four types: Morphea, Generalized Morphea, Linear Scleroderma, and En Coup de Sabre. Each type has different degrees of skin thickening. Usually, Localized Scleroderma has little to no complications with mobility but may change the patient’s quality of life due to changes in appearance.

Systemic Scleroderma (also known as systemic sclerosis) affects the skins and internal organs (2). Systemic Scleroderma is separated into diffused and limited forms. About 90% of people diagnosed with Systemic Scleroderma have Raynaud phenomenon, a circulatory disease that cuts blood flow to important parts of the body, like the hands and feet.  The systemic form of Scleroderma can affect the lungs, kidneys, heart, gastrointestinal tract, and muscles (2).

At 17, I was diagnosed with Localized Scleroderma. Through a Dermatologist, I had a skin biopsy on a bald spot on my head. The biopsy confirmed I had Morphea. For a couple of years, I dealt with my hair becoming brittle and falling out. I used a topical solution to help promote new hair growth.

At 21, I started noticing several unusual body and skin changes. Some of my skin started changing color and became dry and cracked. My fingers became tight and started to become difficult to use. Writing and typing was harder to accomplish. To hold a paintbrush brought shooting pain through my right arm. Soon my finished artwork was my only artwork.

My knees would lock up and my muscles stiffened, making walking and laying down painful. My breathing issues flared up and progressively got worse to where I used my inhaler two to three times a week. Then, my Raynaud’s bombarded me and had me rushing to the Children’s Hospital in Milwaukee, as my body temperature refused to warm up. My feet were a bluish purple for over two weeks.

I found out that there was signs of skin thickening through my nails and scarring on my toes. My Scleroderma specialist told me I had the limited form of Systemic Scleroderma. My doctor also suggested I go through more tests to see if the Scleroderma is attacking my internal organs, especially my lungs. I have yet to take the CT scan.

For some time, I fell into a depressed state. Even though I hadn’t done anything wrong, I was being punished. After I let myself cry over my condition, I made a decision to never allow myself to fall to the level of the disease and to fight with everything I have.

I started Stormy Eye Design with the hope to sell my artwork. Recently. I’ve managed to come up with a plan to use my artwork as a tool to raise awareness to several issues including Scleroderma.

The Scleroderma Foundation works to support patients, educate the public, and raise funds for research for Scleroderma.  Each piece of my artwork sold, $10 is donated to the Scleroderma Foundation so researchers can one day find a cure.

Feel free to visit my Etsy page, Stormy Eye Design, and share this post. The more people that know about Scleroderma, the chances of finding a cure increase. I believe that we will find a cure for Scleroderma!

Support the Scleroderma Foundation by visiting http://www.srfcure.org/. 

Fun Facts
June is Scleroderma Awareness Month and June 29th is World Scleroderma Day.

References
1. Roddick, Julie. "Autoimmune Diseases." HealthLine. N.p., 22 July 2015. Web.
     www.healthline.com/health/autoimmune-disorders#Overview1
 
2. Clements, Philip. "Systemic Sclerosis: Diffuse and Limited." Systemic. Scleroderma     Foundation, May 2015. Web.
     www.scleroderma.org/site/DocServer/systemic.pdf?docID=325
 
3. Falanga, Vincent. "Localized Scleroderma." Localized. Scleroderma Foundation,           May 2015. Web.
    www.scleroderma.org/site/DocServer/Localized.pdf?docID=317




This post first appeared on Stormy Eye Design, please read the originial post: here

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The Complete Beginner's Guide to Scleroderma

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