Together, we are more than scleroderma

Scleroderma (also known as systemic sclerosis) is a rare, autoimmune disease that can affect connective tissue throughout the whole body, both inside and out.1,2 Everyone with scleroderma has a slightly different combination of symptoms, which is why there are many different experiences with scleroderma.2

Because scleroderma is so rare, you might not know much about it. It can be hard to find understandable or comprehensive information on scleroderma and difficult to know what it all means.

More than Scleroderma™ has been developed to support and guide you during your journey, by providing information and resources that you can trust, all in one place.

It summarizes the current scientific knowledge, latest news, and real-life experiences, and provides convenient resources to help you along the way.

In the United States, a rare disease is defined as affecting fewer than 200,000 people.3
scleroderma patient eureka
Adjusting to your diagnosis
Since my diagnosis with scleroderma, life has not only changed for me - but also for my family. We all have felt the impact.

Patient stories

You have to figure it out for yourself and just keep fighting.
You have to keep on living your life.
Lung problems
I was always a runner and noticed it was getting more difficult to keep up with my routine. I know now that was scleroderma, but I still try and push myself to be active when I can and make the most of each day.
Support groups
You are not alone in the world of scleroderma. Information, support and advice are available.

References

  1. Derrett-Smith E, Denton C. Systemic sclerosis: clinical features and management. Medicine.

    2010;38(2):109-15.

  2. Varga J, Abraham D. Systemic sclerosis: a prototypic multisystem fibrotic disorder. J Clin Invest. 2007;117:557-567.

  3. U.S. Food & Drug Administration. Orphan Drugs Act – Relevant Excerpts. Updated Aug 2013. https://www.fda.gov/forindustry/developingproductsforrarediseasesconditions/howtoapplyfor
    orphanproductdesignation/ucm364750.htm
    Accessed May 2017.

     

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