Scleroderma Toolkit

The Scleroderma Journey

Discover helpful tools that can help you navigate the scleroderma journey with confidence. 

The purpose of this toolkit is to give you many tools to help you manage the condition. There are also links to other sites for further information on a topic. 

1 - Initial Diagnosis

Learn more about what you can do when you are first diagnosed, the most common symptoms of scleroderma, and other symptoms you may experience.

2 - Tests You May Experience

Once a diagnosis is received, there are multiple tests you may experience to learn more about your diagnosis. Remember, each individual with scleroderma is unique, so you may not undergo all these tests.

3 - Management Plan

Your team of healthcare professionals will help you manage your scleroderma and find the best treatment options for your individual journey. Learn valuable tips on nutrition and exercise to improve your health and well-being.

4 - Treatments

There may not be a cure, but treatments and medications are available to manage the diagnosis. It is essential to do your research and advocate for yourself. 

5 - Support

Having support is very important with a rare diagnosis. Please take a moment to read our collection of stories about individuals who have been affected by scleroderma. We hope that these stories will provide you with a sense of support and encouragement.

You don’t get to pick your disease, but you can pick your attitude.


Additional Information

Mental Health

How scleroderma may impact your mental health. 

Care Partner Support

Learn more about how to be a great care partner.


Discover the wide range of resources that are available to you.

"I'm not my disease. I am still me. And you know, and the more I'm me, the less I am scleroderma."



Now that I have a diagnosis of scleroderma, what is going to happen next?

Scleroderma varies from person to person. The resources in this toolkit will assist with a better understanding of what is to come on your journey and make it a little less overwhelming.  

What is scleroderma to me? How do I explain scleroderma to others?

Below is a template that you may use to help organize your thoughts about how scleroderma affects your life so you can more easily explain it to people around you.

Scleroderma is an autoimmune disease that can affect multiple organs but it is unique to each person.

Scleroderma affects my _______________________ (skin, face, eyes, hands, lungs, brain). 

I sometimes have difficulty with ______________________ (task list). 

I rarely or never have issues with _______________________. 

Most importantly, I am not my scleroderma.

Does scleroderma usually run in families?

Scleroderma isn’t commonly passed down from parents to children. While genetics can play a role, it is rare for immediate family members of someone with scleroderma to develop the disease. Instead, they might be more likely to have other autoimmune conditions like lupus or rheumatoid arthritis.

Research is ongoing to understand better how genes and the environment may cause scleroderma. See these references below:

What are some causes of scleroderma?

Scleroderma has uncertain causes, but some factors can increase the risk of developing it. While the exact reasons are not fully understood, here are some things to be aware of:2,3


Research is ongoing to understand better how genes and the environment may cause scleroderma. See these references below:

Will my life change?

"Scleroderma diagnosis will change everything. Absolutely everything. We’ve been married 30 years, and every single thing changed in our lives.  Your life is going to look different. It’s just like grief…what you strive for is to create the life that you have with scleroderma in there." 

-Diane S -  (partner of newly diagnosed individual with Scleroderma)

About Us

To address the need for meaningful and relevant content about scleroderma from trustworthy sources, our team developed the Scleroderma Toolkit with funding from the Rheumatology Research Foundation (Lawren H. Daltroy Preceptorship in Health Communication).