--- title: "From Patient to Advocate: My Scleroderma Journey" description: A patient shares her journey with systemic scleroderma and why advocacy and research are critical to improving treatments for this rare disease. image: https://www.patientsrising.org/hubfs/elaines%20story.jpeg --- [![Patients Rising](https://www.patientsrising.org/hs-fs/hubfs/raw_assets/public/PatientsRising-u4m/templates/images/patients_rising_logo.png?width=120&height=900&name=patients_rising_logo.png "Patients Rising")](https://www.patientsrising.org/) - Policy Center - - [Policy Framework ](https://www.patientsrising.org/policy) - [Affordability ](https://www.patientsrising.org/policy/affordability) - [Accountability ](https://www.patientsrising.org/policy/accountability) - [Innovation ](https://www.patientsrising.org/policy/innovation) - [Federal Healthcare Policy ](https://www.patientsrising.org/policy/federal) - [Learning Center ](https://www.patientlearningcenter.org/) - - [LEAD Education ](https://www.patientlearningcenter.org/lead) - [Our Community ](https://www.patientsrising.org/our-community) - [Patient Senate ](https://www.patientsrising.org/patient-senate) - Insights - - [All Posts ](https://www.patientsrising.org/advocacy-updates) - [PR Magazine ](https://www.patientsrising.org/pr-magazine) - [Patient Stories ](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) - [Medical Bankruptcy in America ](https://www.patientsrising.org/medical-bankruptcy-america) - [State of the Patient Podcast ](https://www.patientsrising.org/state-of-the-patient-podcast) - Get Involved - - [Share Your Story ](https://www.patientsrising.org/storyshare) - [Become an Advocate ](https://www.patientsrising.org/become-an-advocate) - [Join the Patient Senate ](https://www.patientsrising.org/patient-senate) - [Join Our Community ](https://www.patientsrising.org/community) - [Events ](https://www.patientsrising.org/events) - - [State of the Patient Summit & Rise Awards ](https://www.patientsrising.org/events/summit-and-rise-awards) - [Advocacy Fly-ins ](https://www.patientsrising.org/patients-rising-fly-in) - [Virtual Lunch n' Learns ](https://www.patientsrising.org/events) - Virtual Town Halls - About Us - - [Our Mission ](https://www.patientsrising.org/about-patients-rising) - [Our Principles ](https://www.patientsrising.org/patients-rising-principles) - [Our Team ](https://www.patientsrising.org/team) - [Our Board of Directors ](https://www.patientsrising.org/board) - [Our Advisory Councils ](https://www.patientsrising.org/advisory-council) - [Partners and Coalitions ](https://www.patientsrising.org/partners) - Corporate Partnerships - [Funding & Financial Reports ](https://www.patientsrising.org/financial-transparency) [Donate ](https://patientsrising.org/?form=support-patientsrising) This is a search field with an auto-suggest feature attached. - There are no suggestions because the search field is empty. [Patient Stories](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) [scleroderma](https://www.patientsrising.org/advocacy-updates/tag/scleroderma) Nov 11, 2025 From Patient to Advocate: My Scleroderma Journey Written by [Elaine](https://www.patientsrising.org/advocacy-updates/author/elaine) SHARE Link copied! Imagine your hands looking like they have been dipped in acid , spreading up your arms and past your wrists.  Imagine waking up nightly and throwing up whole food (hours after having dinner).   Imagine simple tasks or short walks leaving you short of breath, hardly able to keep a conversation going without stopping to catch your breath.  Imagine fatigue to the point of feeling as if you were walking through cement or quicksand daily. Imagine skin so tight it feels as if it will split open if you move. Can you picture it? Now imagine the person living that existence is a friend, a loved one, someone you know, someone close to you…ME!  There are approximately 300,000 people in the United States living with Scleroderma of which approximately 100,000 are living with a severe and aggressive systemic form called Systemic Sclerosis.  Yet, Scleroderma research remains underfunded.  It was 2016 when my SCL-70 antibody was found to be positive ultimately leading to my Systemic Sclerosis diagnosis.  My Scleroderma story is a little different than most patients because I was already under the care of a Rheumatologist for a Rheumatoid Arthritis overlap diagnosis when I got really sick with what we now know is Scleroderma.  Living in Los Angeles also was an additional blessing because the teaching hospital I am a patient at was familiar with this rare disease and investigation and work up didn’t take anytime, while most other patients struggle to receive a quick diagnosis and treatment.  The diagnosis is not made on bloodwork alone but requires a work up by a specialist in Scleroderma.  And, that is the reason I advocate.   Advocacy brings awareness. Awareness brings research.  Research brings improved treatments. Improved treatments (arthritic fingers crossed) hopefully brings a cure for our rare disease community.   ## My Motivation My biggest motivation is my family, my friends and my chronic illness/autoimmune disease community. I’m also inspired by my medical team who works together for my care while educating me about my disease and treatment.   [Facebook](https://www.facebook.com/profile.php?id=61573442404462) [Instagram](https://www.instagram.com/elainesautoimmuneadventure) [Blog](https://youtube.com/@elainesautoimmuneadventure?si=gzSvyo_HRf7X_ACk) --- [Join the Scleroderma Community at Patient Rising](https://community.patientsrising.org/join?invitation_token=c8659f7a7da65b981eca9cfdd7bfdc95a7cea9c1-2c07f6b1-b1f4-4e67-8ea6-3091f21eec5d) Tags: [Patient Stories](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) [scleroderma](https://www.patientsrising.org/advocacy-updates/tag/scleroderma) ## Related Posts [View All News ](https://www.patientsrising.org/advocacy-updates) [Patient Stories](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) Jul 08, 2026 [A Daughter's Mission: Fighting for Her Mom's Medically Necessary Care](https://www.patientsrising.org/advocacy-updates/a-daughters-mission) [Read More ](https://www.patientsrising.org/advocacy-updates/a-daughters-mission) [Patient Stories](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) Apr 18, 2026 [Multiple Myeloma Story: 3 Years Misdiagnosed Before Diagnosis](https://www.patientsrising.org/advocacy-updates/multiple-myeloma-misdiagnosis-paula-story) [Read More ](https://www.patientsrising.org/advocacy-updates/multiple-myeloma-misdiagnosis-paula-story) [Patient Stories](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) Apr 16, 2026 [Denied Care: A Multiple Myeloma Patient’s Fight for a Specialist](https://www.patientsrising.org/advocacy-updates/multiple-myeloma-specialist-access) [Read More ](https://www.patientsrising.org/advocacy-updates/multiple-myeloma-specialist-access) ## Get Updates In Your Inbox Sign up for updates about our patient education, support and advocacy programs and initiatives. 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All rights reserved. - [Contact Us](https://www.patientsrising.org/contact-us) - [Privacy Policy](https://www.patientsrising.org/privacy-policy)   - [Terms of Use](https://www.patientsrising.org/patients-rising-terms-of-use) ```json { "@context" : "https://schema.org", "@type" : "BlogPosting", "author" : { "@type" : "Person", "name" : "Elaine", "url" : "https://www.patientsrising.org/advocacy-updates/author/elaine" }, "dateModified" : "2026-03-15T02:21:11.088Z", "datePublished" : "2025-11-11T14:13:02.000Z", "headline" : "From Patient to Advocate: My Scleroderma Journey", "image" : [ "https://www.patientsrising.org/hubfs/elaines%20story.jpeg" ], "mainEntityOfPage" : { "@id" : "https://www.patientsrising.org/advocacy-updates/from-patient-to-advocate-my-scleroderma-journey", "@type" : "WebPage" }, "publisher" : { "@type" : "Organization", "logo" : { "@type" : "ImageObject", "url" : "https://www.patientsrising.org/hubfs/Patients%20Rising%20Logo%20RGB%20(1).jpg" }, "name" : "Patients Rising" } } ```