Do you know what Scleroderma is?

Today is rare Disease Day. Sadly I have a loved one with a rare disease called Scleroderma. Less then a year ago I had no idea what that word meant and now I know all too well. It rocked our worlds when we found out, but it has absolutely made me treasure every moment with my sister. I love her with all my heart!

Scleroderma Foundation

So what is Scleroderma? 

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.

Only about 300,000 people in the United State have Scleroderma so much is not known about this disease.  It took my sister almost 2 years of lots of tests and lots of wrong possible diagnosis before they were able to finally diagnosis her with Scleroderma.   I wish more was known about this disease so she would have been able to tell earlier what disease she had and maybe she would have been able to stop a lot of the side effects of Schleroderma that she is now having to live with.  For more information about Scleroderma please follow this link..http://www.scleroderma.org/medical/overview.shtm

In honor of Rare Disease Day and my sister, I am doing a giveaway! The winner will have a $25 dollar donation to the Scleroderma foundation in their name made and a set of note cards from http://teresanadeau.com/notecards.htm

To enter this giveaway just leave a comment for each one of these that you do.  

1. Like my page on Facebook  https://www.facebook.com/pages/Never-a-Dull-Day-in-Poland/345205038846807

2. Like the Scleroderma page on Facebook https://www.facebook.com/SclerodermaUS?sk=wall

3. Follow me a Twitter @neveradulldaypo

4. Follow me a Pinterest http://pinterest.com/kkagele/

5. Subscribe to my blog by email

6. If you are a fellow blogger repost this giveaway on your blog

Winner comment number will be selected by random.org. The giveaway will run through March 6th.

Good luck and thanks for helping spread the world about this disease!

love kelley
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21 Responses to Do you know what Scleroderma is?

  1. You Facebook page threw an error, couldn’t do that entry :(
    Thanks for being so giving!

  2. I follow you on Facebook.

  3. I liked the Scleroderma Facebook page

  4. Jennifer Herrmann says:

    Kelley, thank you for you continued support!

    In support of “Rare Disease Day 2012″ please join NORD on February 29th in sending a message to President Obama, Members of Congress and other elected officials on Rare Disease Day by going to “http://rarediseaseday.us/take-action-now/handprints-on-the-hill/”.

    The following is an except of the letter I sent:
    I am 1 of very few people that has the rare form of diffused systemic scleroderma and has caused the combination of secondary diseases of interstitial lung disease, pulmonary hypertension, rheumatoid arthritis, Raynaud’s and GERD just to name a few. I worked extremely hard at a young aged and worked my way up through a company and within 5 years and by age 29 I was the Vice President of the company. However, within the next 5 years my life it would be turned upside-down forever. A few months after my 34th birthday I started getting sick. I spent the month prior to my 35th birthday in a hospital bed, followed by 15 months of specialists, medical tests and surgical procedures I was “officially” diagnosed. Before I could reach the age of 36 I was 100% disabled. I am now 36 my conditions require major testing every 3 months to monitor my conditions. If my conditions continue to deteriorated I may be faced with a double lung transplant. Being diagnosed and the process of being diagnosed is not something I can put into words that would allow you to truly understand what it is like to go through. My only hope is that you read these few words of my story and it persuades you to support the funding of medical research for not only scleroderma but other rare diseases. I also urge you to support insurance reforms for people with rare diseases.

  5. Noel Giger says:

    I like the SF FB page

  6. Noel Giger says:

    I follow you on Twitter @noelgiger

  7. Noel Giger says:

    I follow you on Pinterest!

  8. Went back and hit what I missed that 1st time around!! =)

  9. Lisa says:

    I follow you on Facebook! :)

  10. Katy says:

    Followed, Tweeted and Pinned! :)

  11. follow you on facebook

  12. Like the Scleroderma page on Facebook

  13. Follow you on Twitter @ReneeAChapman

  14. Kitty says:

    Yes, I know something about Scleroderma because my best friends mother suffered with it. Like your FB page.

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