Woman Shares Her Battle With Fatal Form Of Scleroderma
CBS Los Angeles (con't)
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VAN NUYS (CBSLA.com) — Kristine Cruz-Munda often receives compliments on her glowing skin.
But what people don’t know is that the one thing that makes her so pretty is also killing her.
The La Crescenta mother has scleroderma, an autoimmune disease that hardens and tightens the skin and connective tissues. For some people, like Kristine, the disease also targets other organs.
“They say, ‘Oh, your skin is so beautiful. What’s your makeup?’ And then I say, ‘No, I’m sick!’ ” Kristine told CBS2/KCAL9’s Pat Harvey.
“Why? Because it’s an overproduction of collagen, and it’s getting into her lungs, and she’s actually dying,” said Kristine’s husband, Emmanuel.
It started six years ago when Kristine was three months pregnant with the couple’s second child.
“I would cough like I was coughing out a lung,” she said.
Then she began spotting.
The couple were grateful their daughter Elle made it to full term.
Kristine says the coughing didn’t stop. “It just kept going.”
Doctors prescribed allergy medications and antibiotics, none of which worked.
“About three years later, my husband wouldn’t take allergies as an excuse anymore, and he demanded an X-ray,” Kristine said.
Physicians hit them with news of a disease they’d never heard of: “Nobody knew what it was, and when they told us I was like sclero-what?”
Kristine has a fatal form of scleroderma that attacks her organs.
“The fatality, they said it can happen probably about 10 years after you get diagnosed,” Kristine said. “It’s like cobwebs in my lungs, and it’s fuzzy and it’s white.”
Scleroderma originates from the words “sclero,” meaning hard, and “derma,” meaning skin. The autoimmune rheumatic disease affects a person’s connective tissue, which are fibers that provide the framework and support for the body. Approximately 300,000 Americans suffer from scleroderma.
“Because my kids are so young, I wanted to know how much time I have with them,” Kristine said. “I just don’t know if I’ll have enough time to finish everything with them.”
When she isn’t working or receiving chemotherapy treatments, Kristine spends as much time as she can sharing her love of art with her children. She sells her art on Etsy.com to pay for experimental medicines. She’s used the money to purchase glasses that transport oxygen from a generator to her lungs.
“I’m only at 32 percent of my lung capacity,” she said.
Time is not on Kristine’s side.
“We don’t say mommy only has this much time to live because no one gives us an expiration date,” Emmanuel said.
“I have not told them the chances of the disease being fatal. It breaks my heart to tell them,” Kristine said.
Kristine’s children are well aware that the videos they post to YouTube and the events they participate in help raise awareness for scleroderma, which will hopefully help lead to a cure for their mother’s disease.
“There was one day that my daughter asked me, ‘Mommy, have they found a cure for scleroderma yet?’ And I said, ‘No, not yet. That’s why we’re walking and we want to let people know.’ And she said, ‘Then, how are you going to get better?’ And it just made my heart break to see her face.”
Despite the heartbreak and pain she suffers, Kristine remains optimistic about a cure. With her devoted husband by her side, they are instilling the lesson of perseverance in their children.
“But slowly, as they get older, I want to tell them more about it so they can also spread the awareness. I want them to know that you don’t have to give up,” Kristine said.
The Cruz-Munda family will be taking part in “Stepping Out to Cure Scleroderma” in Van Nuys this Sunday with the hope they’ll raise awareness of the disease.
To make a donation, get involved or learn more about scleroderma, visit the website for the Scleroderma Foundation’s SoCal chapter. You can support “Team Kristine” by clicking here.
To read Kristine’s blog about living with scleroderma, click here.