Raising Awareness

In 2007, Ann Havelock began experiencing a cold sensation, tingling and extreme pain in her hands. Five doctors and a year and a half later, Havelock was diagnosed with scleroderma — a chronic, connective tissue disease usually classified as one of the autoimmune rheumatic diseases.

Symptoms of scleroderma can vary from person to person, however, and because the symptoms are similar to other autoimmune diseases such as rheumatoid arthritis, lupus or multiple sclerosis, diagnosis can be difficult. Misdiagnosis and undiagnosed cases are common. Though scleroderma is chronic, it is not contagious, infectious or malignant. Some cases can be mild, and others can be life-threatening.

“It’s hell having this. It’s a horrible, incurable, unpredictable disease,” said Havelock. “There are days when I feel like I can’t take it anymore. Then I talk to God and to myself and get through. It makes you realize how strong you are with all you have to go through in treatment. I don’t want pity, I just want people to understand that this disease can hit anybody at any time. Young kids can even get it. I have to fight for awareness.”

After her diagnosis in 2009, Havelock said she kept seeing ads for breast cancer walks, and wondered why there weren’t any for scleroderma. To help raise awareness, she took it upon herself to found the Scleroderma Angel Foundation in 2011, which is hosting the Kicking Butt 5K Run/Walk in Redmond on Saturday, June 18 on Dry Canyon Trail at Sam Johnson Park. June is worldwide Scleroderma Awareness Month.

“The 5K is important because the earlier you are diagnosed after the first symptoms, the less chance you have of irreversible organ damage,” said Havelock, whose damage is permanent. “When people hear what the symptoms are, they can go get checked out right away.” In Central Oregon, Havelock said there are about 60 cases of scleroderma being treated at Bend Memorial Clinic alone, and other clinics in the area have cases too.

“You need a team of doctors, because it affects all your organs,” said Havelock, who has separate heart, kidney and lung doctors as well as a dermatologist and a rheumatologist. “I wouldn’t want to be a doctor dealing with it, but I need my doctors to keep learning about it. These doctors really care,” said Havelock. “It’s a full-time job being a patient, and a full-time job being a patient advocate. The patients are the educators.”

To preregister for the 5K, email to mzannray@hotmail.com or visit www.sclerodermaangel.org. The cost is $20 to register before the race, and $25 for race-day registration, which begins at 8:00 a.m. on Saturday, June 18, at the Sam Johnson Pavilion. The Run/Walk starts at 8:30 a.m.