Scleroderma Testimony: Ann Havelock
It was October 2007 when Ann Havelock, who was 67-years-old at the time, started feeling that something was wrong with her body. What began with frigid hands, rapidly evolved to excruciating pain. But it took a year and a half and visits to half a dozen physicians to confirm her diagnosis. She suffered from scleroderma. Ann Havelock decided not to settle for the diagnosis, and she has been fighting ever since – for both herself and other patients.
“It got to the point where I hated to go anywhere, except go to work,” explained Havelock who was a hair stylist. “I didn’t want to go to church. It was just miserable driving, doing anything other than just crawling into myself and trying to retreat into sleep to get rid of the pain.” After work, she would wrap her hand in a hot pad, but they continued to hurt constantly and she ended up suffering from a depression due to the whole process.
Scleroderma is an autoimmune disease, for which there is no known cause and no cure. While between 300,000 and 700,000 people suffer from the condition in the US alone, there is still little education about it and misdiagnosis is common. “Frequently, it’s not like there’s this clear entity that can be easily diagnosed,” said Dr. Michael Feldman, a nephrologist at Bend Memorial Clinic who saw Havelock. “It’s very typical that you have this multi-system complaint and there have been a lot of negative tests and a lot of frustration along the way.”
Frustrated by the lack of information about her disease, Ann Havelock decided to act. This decision consubstantiated in the creation of the 501 (c) (3) nonprofit organization Scleroderma Angel Foundation, which describes itself as for the patient and by the patient. “The Scleroderma Angel Foundation is a group of patients, loved ones, concerned citizens and providers dedicated to the goal of increased awareness of scleroderma and related disorders.”
With the vision of bringing hope to all patients who suffer from scleroderma, the Scleroderma Angel Foundation is focused on promoting awareness worldwide for the disease through education and public discourse. The founders believe that providing information about scleroderma is crucial to deal with the burden of the disease, which is chronic, often progressive, disabling and sometimes fatal.
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