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Ray Woolf: Trekking With Scleroderma

Reprinted with permission of the Scleroderma Foundation Rocky Mountain Chapter. This article appeared in the chapter's Fall 2011 newsletter.

ray woolf of colorado imageNot only does Ray Woolf have scleroderma, a rare disease that most people and many doctors have never heard of, he happens to have a very rare form of it.

Ray was born in Edmonton, Alberta, Canada. His family moved to the United States when he was 6 so his father could complete his doctorate at Michigan State University. The family, including Ray’s three siblings and one foster child, moved into a two-bedroom apartment in student housing. To escape the cramped living quarters, Ray spent lots of time outside, where he developed a love for the great outdoors.

When Ray was 14, his father accepted a job in Colorado. Besides briefly living in Houston, Ray has called Colorado home ever since. He graduated from Arapahoe High School where he played football and wrestled. He married his high school sweetheart, Georgette, and they have four adult children – two sons and two daughters – six grandchildren, and another on the way.

Ray went to college for one semester, but when the money ran out, he got a job painting. Within a few years, he started his own commercial painting company, which he ran for 30 years. Ray sold the business a few years ago when he could no longer keep it going due to scleroderma.

Now that he knows what scleroderma is, Ray realizes he has had symptoms since he was a teenager. His lung collapsed when he was in his twenties. He was diagnosed

Definition: en coup de sabre

En coup de sabre. A form of localized scleroderma, which forms a long crease of waxy skin, resembling a cut by a saber or sword wound usually on the face or neck.

Source: “Understanding and Managing Scleroderma,” Maureen D. Mayes, M.D., M.P.H., and Khanh T. Ho, M.D. Published by the Scleroderma Foundation.

incorrectly with multiple sclerosis and several other diseases. Just five years ago, he was diagnosed correctly with scleroderma.

Ray has linear scleroderma with en coup de sabre and hemiatrophy (a condition where atrophy only occurs on one side of the body or organ). His doctors say he has a rare form of a rare disease.

Linear scleroderma causes lesions and atrophy, usually in a linear fashion. He has lesions on his head that have entered his brain, which started causing seizures a few years ago. He had his right eye socket rebuilt after atrophy caused his eye to sink into his head leading to double vision and distortion.

Ray is quick to point out these symptoms are rare for scleroderma. While most scleroderma patients will not suffer these symptoms, he also has some of the more common symptoms such as Raynaud Phenomenon, acid reflux, as well as some lung and skin involvement.

Three years ago, Ray’s health went downhill fast. This was when he had to sell his business and saw his family’s income decrease severely. In addition to having seizures, Ray also developed knee problems. He couldn’t drive because of the seizures and then he couldn’t walk because of his bad knees, leading Ray into depression. He sat around, gained weight and gave up on life.

After about a year, something clicked, and Ray realized he couldn’t keep living his life this way. So, he did two things: he started volunteering and walking.

Through volunteering, he taught Sunday school classes, supervised youth groups and scouting trips, and became active with the Scleroderma Foundation’s Rocky Mountain Chapter. Soon, Ray realized that there are many others much worse off than he is.

Ray started walking to lose weight, which his doctor required him to do before he would operate on his knees. He built up his distance each day, relying on his cane and trekking poles to help keep his balance. After eight months of training, Ray realized a longtime dream. In 2010, he walked the entire distance of the 500-mile Colorado Trail in 53 days – an amazing feat for anyone, let alone someone living with scleroderma.

Today, Ray keeps busy volunteering, reading, hiking and camping with Georgette, and enjoying time with his grandchildren. He also works part-time test-driving concept cars for a major automobile manufacturer. Someday, he would like to start another business, and he dreams of hiking the John Muir Trail in California.

Read Ray’s daily journal about the Colorado Trail at www.trailjournals.com/woofer

What does Ray recommend to someone newly diagnosed with scleroderma?

  • EDUCATE yourself. Learn all you can about scleroderma so you will be able to understand your doctors’ diagnoses.
  • Join a SUPPORT GROUP and talk to others with the disease.
  • EXERCISE. No matter how much it hurts, it will hurt more if you don’t. Ray feels he can cope with his scleroderma much better when he exercises regularly.

Written by Cyndy Besselievre, Member and Services Associate, Rocky Mountain Chapter.

 

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