My name is Ann Havelock and I have Systemic Diffuse Scleroderma. This is a rare, chronic and incurable autoimmune disease. I was diagnosed in March 2009, one and a half years after my symptoms began. In September 2011, I founded the Scleroderma Angel Foundation to raise awareness and increase education on Scleroderma disorders in the medical community and general public.
Scleroderma is difficult to diagnose and therefore often overlooked, especially in comparison todiseases such as Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) and Lupus. Thousands of Scleroderma patients are un-diagnosed or mis-diagnosed for years, which can lead to life-threatening consequences. The earlier the diagnosis, the less likely the patient will suffer irreversible organ damage. Scleroderma cannot be cured but treatment can assist in stopping the progression of the disease and help relieve symptoms in the hands, skin, lungs, heart, kidneys, esophagus and the GI tract.
It took one and a half years and five doctors to receive my diagnosis. Due to lack of a timely diagnosis, I suffer from chronic disease to my only remaining kidney but was lucky enough to have found Dr. Feldman and the Rheumatology team at Summit Medical Group Oregon – BMC, who have worked to help me navigate my disease and have saved my life. My ultimate goal is to provide education and resources for diagnosed patients and anyone suffering from this disease. My Scleroderma journey is just one of many in Central Oregon and around the world and I am proud to be an advocate who raises awareness and brings hope, resources and education to patients and physicians worldwide.
Click here for 2018 Annual Scleroderma Conference information or more information resources and opportunities to get involved.