Posted by: stephaniesant11 | December 1, 2010

Get Involved!

We are always told to get involved in our communities, right? Well, hopefully this blog has peaked your interest in scleroderma.  If this is this case, I encourage you to do your part and help out in this cause.  There is much that is being done but still there is so much more we can do!  Most places are looking for money for research.  This research is being done to find effective treatments for patients.  It is a way to try to find a cure and a way to relieve suffering of patients.


Stepping out to cure scleroderma



Also, if you are looking for hands-on ways to get involved there are so many volunteer opportunities-even here in Utah.  There are walk-a-thons to participate in or volunteer at, or so many other ways to get involved.  Just ask!  If you are seriously considering getting involved in this cause, check out the tab above where you will find numerous ways to help.

Whether or not you chose to engage in this cause, I encourage you to get involved.  We have all been blessed so much.  Let us do our part to give back.

Posted by: stephaniesant11 | December 1, 2010

A life changing disease

For many who are diagnosed with scleroderma, it is a death sentence.  Many people will go on to live happy and healthy lives, but this is not the case for all.  While many will live long lives, their lives will certainly change.  This is a disfiguring disease that people will have to learn to live with.  Many will lose flexibility and mobility.  Yet, the people who receive this sentence still find ways to carry on.  These are the stories that inspire me.  The other day I watched a video that has inspired me to appreciate my life and live it to the fullest, enjoying all of the many gifts I have. 

These individuals, mostly women, are given this sentence, yet they find ways to be happy and carry on.  I also found a blog where a man details his life with scleroderma.  The way he maintains a positive attitude and lets us into his private life is so inspiring.  Scleroderma is a life changing disease.  It impacts mobility and flexibility.  However it does not have to change your life.  You can still live a happy positive life.  This stands true for all things we encounter in our lives.  It is all about attitude.  Scleroderma is a frightening disease, but it does not have to be a death sentence.  Let us conquer this disease and help relieve those suffering from its effects.

Its all about attitude!

Posted by: stephaniesant11 | November 30, 2010

Scleroderma in the News

In the past month, scleroderma has been in the news several times.  Awesome!  One study, published on the 22nd of November comes from Atlanta.  The article discusses a medication commonly used to treat juvenile scleroderma,

Medicine to help treat Juvenile Scleroderma

Methotrexate.  It should be noted that this medication treats active scleroderma.  Scleroderma is a disease that goes through periods of activity and dormancy.  This study showed a high correlation between the intake of this medication and a decrease in flares of those suffering with localized scleroderma.  46 participants received this medicine weekly, administered orally over a period of 12 months or until the flares stopped.  In addition, all participants, including those with the placebo received a medication called prednisone, daily for a month.  31 of the 46 responded well to the treatment while 7 of the 24 placebo responded well. 

However, there were adverse effects to this disease.  Such effects include weight loss, alopecia, nausea, headache and several other symptoms.  However weight gain was less in those taking Methotrexate.  Fewer patients relapsed that had taken the medication rather than the placebo.  While there were problems with the study, including high drop out rates and adverse effects, it is great to see efforts put in and slightly favorable results.  Researchers are on their way to finding a cure or effective treatment for scleroderma. Exciting!

Posted by: stephaniesant11 | November 30, 2010

The History of Scleroderma


Hello readers!  So, from reading this blog about a little known disease, you are probably thinking that it is a relatively new disease.  That is what I was thinking.  Well readers, we are wrong!  Descriptions of scleroderma have been around since around 400 B.C.  This description was given by Hippocrates, who termed it “thickened skin.”  Then, in the mid 1700s (some sources say 1753), an Italian doctor from Naples named Dr. Carlo Curzio gave the first accurate, descriptive details of the disease.    At this time, a 17-year-old female came into the care of Dr. Curzio.  Her symptoms included hardness of skin on the face and neck.  The skin was also cold to the touch.  After 11 months of treatment of warm milk, foot bleeding, and doses of quicksilver, she was reported as “better.”  Her skin was reportedly softer.

The next step is where some controversy enters.  Some sources state that in 1836 an Italian professor by the name of Giovambattista Fantonetti first termed it “scleroderma.”  Other sources say that a student of dermatology in Paris, J.L. Alibert, was the first to recognize and term linear scleroderma.  There are many names and dates that play into the development of scleroderma.  Here is just a rundown of a few key figures:  T. Addison (1854) differentiated types of scleroderma; Erasmus Wilson (1857) termed “morphea”; M. Raynaud (1863) begin experiencing symptoms that now are termed Raynaud’s Phenomenon; P. Horteloup (1865)  used the term “sclerodermie” which became widely used; In 1869 the American Journal of Medicine reported 3 cases; Finally, the term collagen disease was rejected as one to describe scleroderma in 1953.  Here we can see that there were many of individuals that contributed to the history and development of this disease.

Want to know a cool fact about scleroderma?  Sir Arthur Conan Doyle (author of Sherlock Holmes) used scleroderma as the basis of his story “The Adventure of the Blanched Soldier.”  Isn’t it interesting that there is so much history behind such a seemingly unknown disease?  There is so much out there we do not know!

Posted by: stephaniesant11 | November 30, 2010

Treatment Options

This disease currently is incurable.  However there are a few things that can be done to slow its progress.  This disease is frustrating from a public health standpoint because there is very little to suggest that this disease is preventable.  However, much can be done to slow the progression.  There is nothing to stop the skin thickening, but many studies have shown that keeping the body warm, specifically fingers, toes, and the trunk can help with Raynaud’s phenomenon.  A key factor in scleroderma is early diagnosis.  For those with kidney problems, blood pressure should be managed.  Some doctors have recommended creams for the skin to loosen it and allow for greater flexibility.  Often, flexibility is lost with the progression of this disease and the thickening of the skin.

It has come to my attention that since there are no knowns cures for scleroderma, many people turn to alternative medicine.  Though it is not my first choice of defense, or something I personally would turn to, several sources have claimed it slows progression and aids in softening the skin.  A popular method is using Chinese herbs.  Other sources say Vitamin D supplementation is helpful because many with systemic scleroderma have low levels.  It is also said that Vitamin E gels help patients by softening the skin.

Traditional vs. Alternative

Currently, research is being done to find a cure or prevention for scleroderma.  What do you think?  Should we stay with traditional medicine or continue to explore the world of alternative medicine?

Posted by: stephaniesant11 | November 29, 2010

More on the Effects

So, I’ve touched a little on the symptoms of scleroderma.  Hopefully this post will help readers further understand the severity of the disease.  Again, the symptoms and outcomes vary on the type of scleroderma.  The first kind, localized,

Generalized Morphea Scleroderma

is broken down into two forms:  morphea and linear.  In morphea, patches of skin harden and turn a reddish, purple.  They can be found anywhere on the body.  There can be anywhere from one to a couple of patches.  The patches can grow to extend all over the body.  In that case, it is called generalized morphea.

The effects and symptoms of this disease are much greater among those with systemic scleroderma.  Systemic scleroderma not only impacts the skin, but also underlying organs and blood vessels.  It too comes in two forms, diffuse and limited.  Limited is the less severe of the two.  It rarely involves the organs and usually limits itself to arms, legs, neck, and hands.  Diffuse can occur anywhere and involves the organs.  It usually worsens within the first 5 years of development.  After the time of worsening, there is a period of stability where the disease either stops or the disease progresses at a slow, stable rate.

Depending on the severity of the disease, different diseases can occur.  Such damage/diseases include Raynaud’s phenomenon, calcinosis, dental disease, Esophageal dysmotility (causes difficulty swallowing), gastrointestinal dysfunction, lung disease (most common cause of death in patients), kidney disease, and heart disease.  These disease are dangerous, but are rare.  The most common form is morphea, which, again, only involves the skin.  This disease must be closely monitored and should be under close medical supervision–but then again, what serious disease should not be?

Posted by: stephaniesant11 | November 29, 2010

Who gets Scleroderma?

One of the faces of scleroderma

As mentioned in previous posts, this disease is very diverse.  Therefore, this disease does not affect one specific group of people.  However, there are certain groups of people who this disease is more common among.  This disease is most frequently found among women.  Some sources have even said that 6 out of 7 scleroderma cases are found in women.  This disease is often onset between ages 30 and 50.  However, it can be found at all ages.  The onset also varies between types of scleroderma.  Localized is more common among children and those of European descent.   Systemic form is more common among African Americans and Native Americans.

It has also been demonstrated that while this disease is not largely hereditary (there is a 1.5% frequency of family member having scleroderma), it is more common among those who have a family history of autoimmune disorders.  Most common autoimmune disorders are lupus, thyroid disease, or rheumatoid arthritis.  It is not uncommon to see more than one family member with scleroderma, however it is very rare to get in the first place.  It has also been found that there is an increased risk for this disease among men who have been exposed to high levels of silica.  Hope this helps answer your questions!  Look for more information soon!

Posted by: stephaniesant11 | November 10, 2010

What is Scleroderma? A Basic Overview

So, most of you are probably wondering what scleroderma is.  If you have never heard of this disease, never fear.  If you have, props to you.  Scleroderma is an autoimmune disease.  It involves the hardening of the connective tissue

An Image of Scleroderma

 and usually manifests itself with hardening of the skin.  It comes in two forms:  localized and systemic.  It is estimated that 300,000 people in the United States have this disease.

The first form, localized, is the less serious of the two forms.  This form ususally only invovles the skin, especially the hands and face.  It can range from mild to severe but progresses slowly and does not cause death. 

On the other hand (no pun intended), is systemic scleroderma.  This form affects the other organs of the body, usually the heart, lungs, and kidneys.  It slowly gets worse and often leads to death.

Scleroderma is both a frightening and fascinating disease.  Still so much is unknown.  Have any of you ever heard of scleroderma?  Is there anything specific you want to know?  I am here and happy to answer questions!