Patient Stories

A Vibrant Life and a Generous Spirit: Honoring a Daughter with Undifferentiated Connective Tissue Disease

Robin Joy Sillau was a talented interior designer and writer full of enthusiasm for her family, friends, and work. "My style is everything I see, feel, experience, love, and hate, filtered through the brain and projected like a kaleidoscope into the blank canvases I have to work with," she wrote shortly before her death. "I'm really proud of who I am and what I've accomplished."

Everyone who knew Robin knew that she was a generous and creative young woman. What most people didn't know is that she suffered from undifferentiated connective tissue disease since she was ten. For thirteen years, Robin went from doctor to doctor in search of a diagnosis to explain her dizziness, headaches, and other symptoms. While Robin knew her symptoms were real, all of her doctors told her there was nothing physically wrong with her. For Robin, the worst part of her illness was being told that what she was feeling wasn't real.

Everything changed for Robin when she met Lisa Sammaritano, MD, a rheumatologist at Hospital for Special Surgery. Dr. Sammaritano immediately diagnosed undifferentiated connective tissue disease, a systemic autoimmune disorder that is often misdiagnosed because it lacks the characteristics of well-defined connective tissue diseases such as rheumatoid arthritis, lupus, or scleroderma.

When Robin passed away suddenly at the age of twenty-five, her mother, Holly Snow Sillau, was determined to honor her daughter's vibrant life and generous spirit by turning outward and helping others. She established the Robin Joy Sillau Memorial Research Fund for Connective Tissue Disease at Hospital for Special Surgery with the hope of protecting others from the years of misdiagnosis and lack of diagnosis that Robin endured.

Dr. Sammaritano and her colleagues in the Hospital's Division of Rheumatology will use these funds to conduct pioneering research focused on understanding the disease progression in patients with undifferentiated connective tissue disorder. Ultimately, this work promises to help bring diagnosis closer to the onset of symptoms and determine which therapies are most effective.

Holly and Robin have coauthored an inspiring book, Robin's Wings: Lessons from My Daughter on How to Grieve for My Only Child, in which Holly shares Robin's powerfully honest writings from her blog, Decorated Life, and reflects on how the courage and strength with which Robin coped with her chronic illness have helped her to live with the loss of her only child.

"What I am sick with is not completely uncommon," wrote Robin in a blog entry entitled "On a Serious Note." Here, Robin describes her ongoing struggle with her disease. "If I can help anyone feel remotely better or come out of his or her shell to visit a doctor, which can be so scary, then taking the time to write this post is a worthwhile endeavor."

In the book's acknowledgments, Holly writes, "Dr. Lisa Sammaritano … was the first and only doctor to validate Robin's health issues, and Robin loved her for that."

Robin's Wings is available for purchase on amazon.com. All proceeds will go to the Robin Joy Sillau Memorial Research Fund for Connective Tissue Disease at Hospital for Special Surgery.

To donate directly to the Robin Joy Sillau Memorial Research Fund for Connective Tissue Disease, please go to Giving to HSS. In the Designation field, please select "Other," and then type in the full name of the fund in the blank field that appears.

 

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