her to another rheumatologist who specialized in Scleroderma. Brenda traveled to

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1 Entringer- Personality Profile Final She rubbed her sore hands, massaging them the way one does after leaving their gloves off for too long in the winter. She rubbed them the way she had rubbed them every day for the last three months, relentlessly and with little relief. As she waited outside the doctor s office, Brenda Burns thought she was going crazy. She was only there for a check- up, but thought she better mention the pain in her hands and body that had been bothering her for so long. The doctor finally told her that she might have Lupus, an autoimmune disease that damages parts of the body, such as skin or organs. Just to be sure, her doctor decided to send her to a rheumatologist in Sheboygan to have some blood work done. When the results came back, the rheumatologist told her she didn t have Lupus, but instead had a rare, chronic disease called Scleroderma. Her first reaction, she says, was relief that she finally had an answer, and that she wasn t making it all up in her head. Her second was a question. Scleroderma? I ve never heard of that! I m a nurse, and I ve never heard of that, she said. The rheumatologist told her it was rare, but that there were a few people in the area that had been diagnosed. It was still so rare, however, that he had to send her to another rheumatologist who specialized in Scleroderma. Brenda traveled to the medical college in Milwaukee to see Mary Ellen Csuka, a professor and one of two experts on scleroderma in Wisconsin. Csuka, whom Brenda describes as cutting edge, also leads drug testing, medical studies and research on the subject.

2 Csuka told Brenda that she had a feeling that the Scleroderma was affecting her heart and lungs as well. This led her to yet another doctor at St. Luke s Hospital named Doctor Zwicky. Zwicky specializes in Pulmonary Hypertension, a condition that causes the lungs to stiffen. This makes it harder for the ventricle that pushes blood to the lungs to get oxygen. That results in the ventricle having to pump harder. While all of this was going on, Brenda was unable to work. At the time, she was going on her sixth year as an operating room nurse and her thirtieth year as a nurse. Nurses aren t allowed to work in the OR if they have any open wounds, and Brenda had an open sore on her middle finger at the time she was finding out about all of her medical problems. Csuka told her that she would probably never work again. Brenda says that she looked at Csuka when she heard that and thought there was no way this little blister is going to be the thing that takes me down. Brenda describes all of this with a smile on her face and animation in her voice. She s not bitter or downtrodden about her situation. At first, members of her family faced the news with disbelief and worry for Brenda s life. Her mother, Winnie, thought she might outlive her child, a thought no parent ever wants to dote on. I could see her body slowing down, Winnie said. Her mind was still there, but her body just couldn t do things like before. Winnie helps around Brenda s house, doing laundry and keeping up with the yard work. She says that she s pretty much accepted that Brenda is limited now, but at first it was hard to grasp. She can do some things, but they take her longer to do, and when she gets tired, she quits, Winnie said.

3 Brenda s two sons, Michael and Steven, were both in denial. Winnie describes a time when Michael went on one of Brenda s trips to the doctor and saw the nurse bringing out a wheelchair. He asked if it was for his grandma, and Winnie said no, that s for your mother. She says she thinks that was the moment when Michael realized how limiting his mother s disease was. Brenda said one thing having a chronic illness does is show you who your true friends are. At first everyone is supportive and concerned, but after awhile some people get sick of hearing about it, she said. They expect you to be the same person you were before. Friends like Denis Entringer, she says, are ones you can count on when you need them. Entringer has lived across the street from Brenda for over eight years. He helps shovel her sidewalks in the winter and often comes over to chat. Brenda and Entringer s family have been close since she moved onto the block. They were devastated when they found out she was sick four years ago. She s an amazing woman, Entringer said. She s strong and caring, a great friend. The neighborhood wouldn t be complete without her. Even limited, Brenda lives a fulfilling life. While she misses work most of all, she s happy she got to retire at 51 and spend her time with her granddaughters, Bella and Kendall. She babysits them regularly and says they keep me busy and wear me out. Brenda also has two dogs that she loves dearly and spends much time with. While talking, Brenda had her bulldog, Pearl, on her lap. She keeps me very warm, she said while stroking Pearl s back.

4 Scleroderma has no cure, but with the help of her current doctor, Dr. Zhou, Brenda is very optimistic. Every year she goes in for a skin score where Dr. Zhou pinches her skin to check how hard it is and how much skin he can grab. The more he can grab, the lower her skin score is. The last two years her skin score has been at a plateau. The goal is to have it drop to a state of remission before a five- year mark. Brenda will go in for another skin score in August, making it her fourth year. Everything came at a perfect time, Brenda said. Dr. Zhou showed up from Pittsburgh, and they told me that Csuka doesn t see everyone. My original rheumatologist called me personally to tell me that she would see me. Facing enormous risks and obstacles, Brenda took something that would discourage most people and feels blessed rather than cursed. The Scleroderma Foundation website, one that Brenda frequently visits, provides a chat room for people to search for others with Scleroderma in their area. It was here that Brenda found two women, one in Eden and the other in Campbellsport. This one topic was the only time Brenda seemed to be anything but chipper and upbeat. She spoke to me about the woman in Campbellsport who almost died because she was misdiagnosed. This led to the wrong prescription of medicine that caused severe heart failure and put the woman in hospice. This woman s only wish is to live long enough to see her second daughter get married. With tears streaming down her face and a low, raspy sound in her voice, Brenda went on to say that when you think your situation is bad, someone else s is much worse. When asked how she remains so strong in the face of so much hardship, Brenda said, I m just functional. I do what I do.

5 Contacts for interviews: Brenda Burns Phone: (920) Winnie Franke Phone: (920) Denis Entringer Phone: (920)

6 ABILITIES Canadian Abilities Foundation 340 College St. Suite 270 Toronto ON M5T 3A9 Canada Phone: (416) Fax: (416) Website: About Abilities provides information, inspiration, and opportunity to its readers with articles and resources covering health, travel, sports, products, technology, profiles, employment, recreation, and more. Covers: Quarterly magazine covering disability issues Freelance Facts Established: 1987 Simultaneous Submissions: No Answer Writer's guidelines for #10 SASE, online, or by e- mail. Buys first rights. Circulation: 20,000 Byline given. Pays on publication. Offers 50% kill fee. Queries accepted by mail,e- mail,fax Sample copy free.

7 Responds in 3 months to queries. Publish period after acceptance: Publishes ms an average of 3 months after acceptance. 50% freelance written. Submit seasonal material 4 months in advance. Editorial lead time 3 months. Nonfiction Needs: general interest,how- to,humor,inspirational,interview,new product,personal experience,photo feature,travel Does not want articles that 'preach to the converted'- - this means info that people with disabilities likely already know, such as what it's like to have a disability. Buys mss/year: Submission Method: Query or send complete ms. Length: 500-2,500 words. Pays $ (Canadian) for assigned articles. Pays $ (Canadian) for unsolicited articles. Reprints: Sometimes accepts previously published submissions (if stated as such). Photography State availability Columns/Departments The Lighter Side (humor), 700 words, Profile, 1,200 words.

8 Tips "Strongly prefer e- mail queries. When developing story ideas, keep in mind that our readers are in Canada." This publication is a great fit for my profile because it is a profile, something Abilities publishes. It s also inspirational and adds to the publication because my piece covers a disability many people haven t heard of before. It could enlighten people of a disease that is really rare. It s also a personal experience for my family because we are so close to the subject.