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Amber Paris: Not Alone in the Lone Star State

Eight years ago, Amber Paris and her husband believed they would never be able to have children. Amber has lived with scleroderma since she was a teen.

Amber Paris with daughter photoShe had suffered through renal crisis, digital ulcers and other complications from the disease. The couple discussted their options for starting a family with a rheumatologist, who classified their chances to conceive as high-risk. So, they decided to adopt.

Soon after starting the adoption paperwork, Amber had a big surprise. At a doctor’s appointment, she learned she was pregnant. “We were so concerned about the pregnancy being high-risk, we weren’t even trying to conceive,” Amber recalled.

Women living with scleroderma are at a higher risk for some complications during pregnancy, particularly renal crisis and cardiopulmonary issues. Some research indicates that women should delay conception until their disease has stabilized.[*] As is the case for many chronic illnesses, especially autoimmune diseases, pregnancy may relieve some of a woman’s symptoms. Pregnancy, however, caused Amber’s system to go haywire.

“The pregnancy exacerbated my symptoms. The doctors were really worried about my kidneys since I had previous issues,” she said. “While my kidneys didn’t crash, my tests were all borderline during the entire pregnancy.”

Amber’s doctors ordered her to go on five weeks of bed rest because her amniotic fluid was so low. “Our doctors were afraid that the baby would sit on the [umbilical] cord and suffocate,” she said. The amniotic fluid eventually started to rise again but it was a scary moment for the parents-to-be. Daughter Jacelyn, now eight years old, was born nine weeks early.

“This disease isn’t a life sentence”

Today, Amber is a stay-at-home mom living in Watauga, Texas, just outside the Dallas-Fort Worth area. She’s active with the parent-teacher association at her daughter’s school. She also volunteers a lot of her time for the Scleroderma Foundation’s Texas Bluebonnet Chapter. Amber’s goal is to jump-start a juvenile support system for younger scleroderma patients and their family members, a service that wasn’t around for her when she was diagnosed at 14.

At 13, Amber’s hands began to get horribly cold. She tried to warm them under warm water, but it felt scalding hot. Amber and her parents knew something was going on, and shortly thereafter, she was diagnosed with Raynaud Phenomenon. Then, came the ulcers on her fingers and a scleroderma diagnosis.

As a teen growing up in Colorado, Amber tried to ignore the disease. She wouldn’t take her medication and tried to live the normal, teenage life. “I was a cheerleader. I would cheer out in snowstorms,” she remembered. “I don’t recommend it. But, it’s difficult having scleroderma as a teenager. The hardest thing when you’re growing up, especially at that age, is that you don’t want to be different from anyone else.”

“I kept the disease to myself. I would tell a few close friends, and I remember one in particular. Her mom called my mom saying that she was crying uncontrollably. She had looked up the disease online and it said that I only had five years to live. My mom had to explain that some of the information out there is old and that this disease isn’t a life sentence.”

“Then, as I was getting older, I started to tell more people, especially those who had other illnesses. It made us feel less alone, and it helped me open up. I found that it was actually good to talk about the disease because I could let people know that there are others struggling with scleroderma, and there’s hope. There is a way to live a normal, great life even with a chronic illness.”

Amber went on to college and got married in 1998. By then, her doctors began to question why she was still living in the cold Colorado climate. She and her husband decided to move to Texas for the lower elevation and warmer temperatures. That led to a slight reprieve in her symptoms for about seven years.

Hope for the Future Ahead

“Amber was a normal teenager who had to sometimes deal with serious issues because of her disease,” said her mom Debbie Hinson. “Like a lot of other parents, we were told about support groups but were advised not to involve Amber in them because of the age difference. A lot of the patients were in the later stages of the disease, and it could be discouraging or frightening to her.”

“I talk with parents today, and doctors are still discouraging kids from support groups,” Amber said. “I felt alone and didn’t have anyone else to talk to about scleroderma.”

“During the past year, the Texas chapter has been contacted by several parents whose kids are suffering from the disease,” said Cindi Brannum, the chapter’s executive director. “These parents didn’t know where to turn to or how to find a place of support for their kids since the groups they had checked out were mostly geared towards adults. As a result, I started calling and sending emails to Amber and her mother.”

Together with her mom, Amber is heading the effort to form an innovative online support group for juvenile scleroderma patients and their families living in Texas.

“We want to give kids and their parents a sense of home. They are not alone. There are other patients who have grown up and gotten through scleroderma. We’ve had children, we’ve gotten married. I want to provide an environment where kids can talk to other kids about what they’re going through. There’s hope and a bright, wonderful future ahead for them,” said Amber.

*Remember, each pregnancy is different. Be sure to check with your doctor about what your individual risks are as it relates to pregnancy and conception.

This article originally appeared in the Summer 2012 issue of "Scleroderma Voice" magazine. Become a member today to receive this publication!

 

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