Welcome to Project Scleroderma!

Project Scleroderma’s mission is to raise the global level of Scleroderma awareness and to encourage support of Scleroderma Research. The clip below is a trailer from our recently completed documentary film, “Beneath The Surface”.  Our intention is to use this documentary as a tool to educate as well as to generate a larger level of support for Scleroderma Research.

Narrated by Bob Saget, Project Scleroderma: Beneath The Surface is a film that documents the grass-roots mission of a young woman from Philadelphia working to raise awareness for a scarcely known disease that took her mother’s life. In this highly inspirational and hopeful story, viewers follow Christy McCaffrey as she works diligently to create a global movement to rally behind the patients who are suffering from this terrible disease. 

With the help of social media outlets, Christy connects to Scleroderma patients all over the world offering them a voice in this film as a platform to champion for their own cause. The film is an intimate look into the everyday struggles and painful setbacks of Scleroderma patients blended with highly educational details about the disease from leading doctors and researchers to illustrate the primary message: “Scleroderma awareness simply cannot wait.”

 

Scleroderma (skleer-oh-DUR-muh)

Scleroderma is a type of autoimmune disorder, which is a condition that occurs when your immune system mistakenly attacks and destroys healthy tissue. It is a group of progressive diseases that involve the hardening and tightening of your skin and connective tissues, which are the fibers that provide the framework and support for your body, along with changes in the skin, blood vessels, muscles and internal organs.


12 responses to “

  • Lindsey

    Have you been to Western Canada on your travels??

  • Dana

    I think your amazing to do this, I never hear anything about Scleroderma & I had systemic scleroderma for 26 yrs . So thank you for getting this message out there. Your mom would be proud of you ❤

  • victoria bezic

    From the bottom of my heart as a sufferer thank you. Thank you a million times thank you

  • Helene Golston

    I love your passion to help raise awareness for Scleroderma. I have had it for 18 years and never felt like a victim. I have overcome many obstacles and disabilities. I’ve learned to concentrate on my Abilities not my DISabilities. I have Systemic Diffuse Scleroderma and it has changed me for the better. It is not a curse but a blessing in my life. It has taught me to appreciate every breath I take and every move I make, however painful. I am more compassionate towards others, esp. those with debilitating diseases. I ave been a Scleroderma support group leader since 1996 and my mission, I believe, is to give patients hope. I was once bedridden and dying from all the meds I was on( 48 pills a day,) but God saw me through. With His help and the love of my family I currently live a wonderful and blessed life. Thank you for doing this and I will be sharing your video with anyone I know.

    • Project Scleroderma

      Helene,
      Your post is beautiful to read! Thank you so much for sharing! I am sure you are such an inspiration to those who attend your group, keep doing the wonderful work you are doing, and thank you again for reaching out and supporting our common mission!!
      Sincerely,

      Christy McCaffrey

  • Lisa DeGirolamo Spiegel

    I was my own advocate when I got sick back 2005. I was diagnosed in 2007 with Scleroderma in which it gave me Pulmonary Hypertension in 2009. I’m on top of my health care and I push myself every day to get up and keep on going. We have to be strong and educate and promote the public about Scleroderma. I can’t believe how the media won’t help promote more with this disease. The worse part is people look at you and comment and say you don’t look sick ! We as patient’s need help just like all the other disease’s. Thank’s for all that you do.

    • Project Scleroderma

      Lisa,
      Thank you for reaching out! You are absolutely right that as patients, or family members of patients, we have to get the word out there as best we can and as a patient it is very important to be your own advocate. Together we can change the level of awareness for this disease!

      Thank you!

      – Christy McCaffrey

  • Fi

    I am from Scotland living in France and would really like to watch the film. Where can I see it? Thanks.

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