Where do you find support?Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey...reactions27repliesCopingFriends & Family
Getting doctors to understand I spent 10 years of my life in excruciating pain. The last two years of my life I considered not being here...reactions2replies
What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing...reactions5repliesAwarenessWork & EmploymentCoping
A Lifetime of Being Disbelieved10 years ago I was diagnosed with progressive systemic sclerosis, SSc.For many years I've suffered with severe gastrointestinal issues, and for years...reactions4comments