It started off as a low-grade fever with aches and pains, your typical flu-like symptoms. But instead of tapering off after a few days, Lisa Affi’s symptoms continued for 12 weeks.
At first her doctor thought she had a tumor after seeing her X-rays. But it wasn’t long before Affi got her answers: she had Crohn’s, a gastrointestinal disease that can result in severe abdominal pain, rapid weight loss and nausea. So far, there is no cure.
“My mom said I looked like death,” recalled Affi, 46. “Thinking I had a tumor, I thought I was dying. That whole experience was life-changing. It changed my perspective about life. Once I found out I had Crohn’s, I would tell myself each day, ‘today’s a good day.’”
It has been 14 years now since Affi was diagnosed with Crohn’s, a major category of inflammatory bowel disease which affects 1.4 million Americans usually diagnosed between the ages of 15 and 35. Her first doctor was unable to alleviate her pain and discomfort, but after switching caregivers she has now been in remission the past two years. She is taking Humira, medication that is often used for other illnesses and unfortunately one side effect is a higher risk of cancer.
Affi’s struggle to get ahold of her disease has propelled her to tell her story to co-workers at Southern California Edison (SCE). As part of the company’s annual employee giving campaign, she is working to raise money for the Crohn’s and Colitis Foundation of America and will be doing her first half-marathon on Nov. 16 in Las Vegas, just four days before her 47th birthday.
“If you know someone with Crohn’s, you know the suffering they are going through. I don’t hide it and I’m not shy about it,” said Affi, who notes that a cure could be found in her lifetime, according to research from the Crohn’s and Colitis Foundation.
“I’m so overwhelmed by the love and support of everyone helping in my quest to do this,” she added, noting that her Corporate Communication’s department has made her campaign its official fundraiser. “It goes to show the quality of people we have and it’s a testament to our team.”
So far, Affi has raised $1,205 of her $2,400 goal. Those interested in helping raise money for Crohn’s and Colitis research can go to her official fundraising page: www.active.com/donate/lasvegasLAOC14/teamchallengelaocLAf. The last day to donate is Nov. 4
“We have a tradition of giving here at Edison and last year our employees donated 281,112 volunteer hours and raised $2.9 million in funds for various charities and nonprofits,” said Tammy Tumbling, SCE director of Philanthropy and Community Investment. “We wish Lisa the best in the upcoming half-marathon as she and her co-workers help raise funds for this worthy cause.”
Affi has been training three to four days each week and is now walking eight miles. It’s an impressive accomplishment for Affi who has constant pain in her feet, but is determined to finish the 13.1-mile race.
“This is the first time I have felt well enough physically to do any kind of marathon,” she said. “It’s really a dream come true.”
It’s been a long journey for Affi since her diagnosis, but her attitude is always a positive one. It was six months after she learned she had Crohn’s that she sought to find her birth family. The search only took six weeks.
“Crohn’s was my impetus to go and look for my birth family and find out my medical history,” she said.
Affi learned that no one in her bloodline has been diagnosed with Crohn’s, a disease that is hereditary.
“Many people are still not familiar” with Crohn's, said Jessica Dean, endurance manager with the Crohn's & Colitis Foundation of America. “Unfortunately, because of the nature of the disease, many people are not comfortable talking about it, often being nicknamed as an ‘invisible disease.’ Many people who have inflammatory bowel disease look healthy on the outside, but in fact are undergoing lots of pain.”
Today, Affi uses medication to control her symptoms. She checks in with the doctor every six months or so where her white blood cell count is monitored. She has changed her diet to gluten-free, non-dairy and avoids most grains. She has also reduced her sugar intake.
This week, Affi’s training goal is to walk 10 miles, but a recent bout with the flu has slowed her down a bit. Still, she will be ready to complete the half-marathon in mid-November.
“There is life after diagnosis,” she said, always positive. “There is hope for those who have Crohn’s.”
For more information, visit: ccfa.org.
To donate, visit Lisa Affi’s official page: www.active.com/donate/lasvegasLAOC14/teamchallengelaocLAf.