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The Five Rules: Abbye Gorin's Advice for Living with Scleroderma

Today, 83-year-old Abbye Gorin is a vision of health and vibrancy. She lives with her husband of 64 years, Steve (who is a young 86), inMetairie, La.,near New Orleans.Together, they still work on architectural projects including catalogs, text, visuals and DVDs.

Abbye and Steve Gorin

Thirteen years ago, when Abbye's journey with scleroderma began, she was scared and didn't know what was happening to her. In late November 1997, she had cold, swollen, stiff hands with numb fingers and cold feet. Years before, she had a similar sensation after a car accident left her with a serious whiplash that had created an obstruction called a thoracic outlet compression.

Knowing those previous symptoms, she went back to the surgeon who relieved the blockage. When tests came back negative for a new blockage, more tests were run. "I was afraid it was scleroderma," said Abbye."I had seen three friends with scleroderma before, and it's just so rare."

The initial diagnosis was a collagen disease, and she was referred to a rheumatologist. This new doctor now said Abbye also had Raynaud's, a condition where a person's fingers, toes, and tips of the ears and nose feel numb and cold. Yet after the diagnosis, Abbye's condition continued to worsen. Her family doctor prescribed medication for her swollen hands but it caused a horrible reaction.

Finally, Abbye turned to Leonard Serebro, M.D., M.B.B.S., a rheumatologist in New Orleans.

"He walked in the room and picked up my hand. He said, 'You have mild scleroderma,'" Abbye recalled. "I had these flashbacks to the people I knew who had passed away from scleroderma. I was scared."

The secret to living with scleroderma

Since 1984, Abbye has specialized in teaching architectural history using electronic technology to create videos, CDs and DVDs. She has a doctorate in architectural history from Virginia Tech, and has worked as a researcher, writer and photographer. Her main interest is pre-Columbian sites in Latin America. Her phenomenal catalog of work includes almost 3,000 items. Even at 83, Abbye has no plans to retire. "Steve and I have just finished a catalog of some of my work for a large Central American library."

To help keep her body and mind running smoothly, Abbye has a strict regimen that includes water exercise three times a week and weekly massage therapy sessions. She also takes no medication for her scleroderma.

Dr. Serebro's Five Rules for Scleroderma Patients

  • No tobacco or smoking.
  • No drinking alcoholic beverages.
  • No caffeine such as soda or coffee drinks.
  • Stay active through exercise such as Aquacise.
  • Stay warm and avoid going outside in temperatures below 60 F.

What is her secret to feeling so well? She swears by five rules she received from her former rheumatologist, Dr. Serebro.

"These were the easiest instructions I have ever had for anything," Abbye said. "I do have a decaf Coke or a decaf coffee but that's it except for a small piece of chocolate. The next step was getting into an Aquacise class, which has been a faithful regimen for 11 years."

Aquacise is an exercise activity done in shallow water. I tcan increase your cardiovascular endurance, muscle and tone, and reduce the impact that many exercise activities have on joints. It is a relief to many, like Abbye, living with scleroderma. She also finds massage therapy treatments help. She has had more than 425 sessions.

Sharing her journey

Besides Dr. Serebro's suggestions, Abbye chose not to discuss her condition with others.

"I decided not to tell my friends or discuss the matter unless my condition went beyond my ability to cover it up," she said. "I just didn't want to deal with the questions. Secondly, people like to talk about their illnesses. I didn't want to have these stories bringing me down or putting negative thoughts in my head."

Finally, in 2010, Abbye realized she wanted to share her scleroderma journey with the world. "I was reading the spring issue of theScleroderma Foundation's VOICE, and I saw a note in very fine print that read, 'the writers and editors rely on people in the scleroderma community to share their personal stories.' Maybe someone else would like to hear my story," she thought. "And maybe, they can start to do some of the things that I have done and it will make them feel better."

The next adventure

With work in a large Central American library on the horizon, Abbye remains strong and active in her work. Plus, she still has destinations around the world that she wants to visit. "I would love to start traveling again," she said. "Steve and I want to see a lot of places."

However, after three transient ischemic attacks (TIAs), a disturbance in the blood flow to the brain that causes similar symptoms to a small stroke, and scleroderma, Abbye and Steve want to be sure that they travel to places where medical treatment is available should she need it.

"There are little things I have had to overcome. I do get tired once in awhile," Abbye said. "I think it goes with the scleroderma. But, maybe it also goes with being 83!"

Photos from Steve Gorin and Ruth Moise Varisco.


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