Advocates on Steps of Congress 2013
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Ava and Ilene Nusblatt

Sometimes the people with the most inspiring stories about the way they live with scleroderma aren't even patients. Spouses, parents and children of those diagnosed with the chronic illness also are affected by it. And they have a valuable voice.

Ava and Ilene NusblattSeventeen-year-old Ava Nusblatt of Yardley, Pennsylvania, is one of the Foundation’s shining examples of support and advocacy for scleroderma awareness. Her mother, Ilene, was diagnosed with systemic scleroderma when Ava was ten years old. She remembers vividly the day Ilene sat her down to tell her the news.

“I didn’t fully understand the danger that would come with it,” Ava recalls. “None of us knew exactly what it would mean.”

At the time, Ilene’s challenges and prognosis were somewhat of a mystery to the whole family. In the ensuing years, Ava has learned much more about scleroderma.

“Time and experience don’t make it easier or harder, but you understand it more.”

Soon after Ilene’s diagnosis, the Nusblatts joined the Foundation’s Delaware Valley chapter. While Ilene participated in a support group, Ava, then in elementary school, insisted on creating a fundraising team for the 2008 Stepping out to Cure Scleroderma walk.

Ava’s team, “Come on, Ilene,” walks every year in support of her mother with the slogan, “At this moment…you mean everything,” borrowed from the popular 1980s song.

That first year, Ava and her team members raised $3,700. The amount contributed under Ava’s leadership after eight walks, including the October 2015 event, totals more than $25,000. Ava is one of the chapter’s top overall annual fundraisers.

“Every year, Ava recreates her web page, updating my health, including hospitalizations and explanations about the disease,” Ilene said. “She adds scleroderma news and even a congressional update.”

In 2010, Pennsylvania congressman Patrick Murphy called Ilene personally to tell her he lobbied for legislation to obtain millions of dollars in funding for scleroderma research.

What drives Ava to work so hard on her mother’s behalf?

“I do it for the research,” she said. “Going through this with my mom, I’ve seen her at her highest and lowest for the past seven years, and I don’t want other people to go through it. I do it because everyone should have knowledge and awareness and help.”

As strong of an advocate for a cause as Ava is, she’s an equally compassionate, loving daughter who has adapted to growing up with a chronically ill parent. An only child, Ava is quick to point out that scleroderma hasn’t made the family dynamic any more difficult. In fact, the Nusblatts are stronger for it.

“Our relationship has grown around it and with it,” Ava said. “It makes life different, but we understand each other. We’ve learned how to communicate.”

Ava nurses Ilene during home IV treatments, and keeps Ilene company on the particularly down days.

From the start, Ilene says she has been as honest as possible with Ava about what she was facing, even if the conversation was uncomfortable, and made sure Ava felt secure that she was hearing the truth every step of the way.

“I want Ava to be able to have her own feelings and talk about it and be okay,” Ilene said. “It’s not just about me.”

Ava agrees kids and parents shouldn’t be afraid to express their feelings, including fear, and talk about it. That’s her biggest advice for other children with parents diagnosed with scleroderma.

“It’s a family effort,” she said. “You’re going through it, too, and you’re allowed to be afraid. And I would bet the parent would feel good knowing their child wants to talk to them.”

Together, Ava and her father have worked around the obstacles that come with scleroderma. They recognize when Ilene needs help with something and when she’d rather do it herself. Ilene’s restricted diet related to her diagnosis is a challenge, especially when she has to avoid fiber, and Ava’s dad has chosen a diet containing mostly vegetables.

“They’re on polar opposite diets, and we’ve figured a way around it,” Ava said. “It’s easier than you’d think.” Ava also is Ilene’s biggest cheerleader. “She constantly nudges me to try activities that I don’t think I can do anymore,” Ilene said. “She says wise things and is usually right.”

Once upon a time, Ilene loved to crochet. The house is full of beautiful blankets she created. Because her fingers are no longer as nimble, Ilene stopped the craft she was so good at and enjoyed. About two years ago, Ava asked her mother why she didn’t crochet anymore. Ilene’s automatic response was, “I can’t.”

“This disease is sometimes very debilitating, but she forgets that she can still do things, and I’m always here to remind her,” Ava said. “I think that’s my biggest job. To say, ‘Yes, you can.’ That’s important to me.” Ilene has started crocheting again.

Since her health has somewhat stabilized that is, she hasn’t improved, but her symptoms have not worsened Ilene is willing to do things that remind the family of her former, adventurous self.

“The physical barriers are a little less in my face now, and I feel like I can make plans and have fun and maybe the other shoe won’t drop to make me cancel.” Ilene said. She has done some traveling, took a ride on a biplane, and was selected to participate in the Foundation’s 2015 National Scleroderma Advocacy Summit in Washington, D.C.

The next big milestone for the family is Ava’s. She is a senior in high school and plans to apply to several colleges in New England, hundreds of miles from home in Pennsylvania. After taking a summer course at Brown University in Providence, Rhode Island, Ava is almost certain she will study neuroscience or psychology. Ilene, never one to discourage her daughter from chasing her dreams, has just one complaint about Ava’s choice of location.

“I have Raynaud phenomenon, and it’s cold up there!” But the condition that affects arteries and blood flow to the extremities, which is common in scleroderma patients, likely won’t stop Ilene from visiting Ava wherever she goes. It’ll just take some extra care and preparation. When she thinks about going away to school, Ava is a bit nervous like any teenager would be, but has no worries about maintaining her close relationship to her mom. Ilene gets emotional when talking about her daughter and what makes her proud.

“I’m most proud that we can be honest and that we can laugh and cry together,” Ilene said. “Ava is an old soul and wise beyond her years. She has a certain determination and tenacity in anything she does. She is my reason to push on because we still need each other, yet we give each other strength.”

“We’ll always be connected,” Ava said. “We’ll be okay.”

(Photos courtesy DonnaLovelyPhotos.com)

 

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