Please take the time to read about my niece, Lulu and her journey with Cystic fibrosis told by her mother, Val.
“When I was in my third trimester of pregnancy with Lulu, the doctors noticed an abnormal intestine on the sonogram. After many scans and visits with specialists, it was suggested Joe and I get tested to see if we were carriers for Cystic Fibrosis. After we both tested positive as carriers, it was clear that our baby’s intestinal issues were an early effect of Cystic Fibrosis, although it could not be 100% diagnosed until she was born. Once Lulu arrived, a blood test, a sweat test, and 4 trips to the operating room confirmed, “Lulu has Cystic Fibrosis”.
“When I was in my third trimester of pregnancy with Lulu, the doctors noticed an abnormal intestine on the sonogram. After many scans and visits with specialists, it was suggested Joe and I get tested to see if we were carriers for Cystic Fibrosis. After we both tested positive as carriers, it was clear that our baby’s intestinal issues were an early effect of Cystic Fibrosis, although it could not be 100% diagnosed until she was born. Once Lulu arrived, a blood test, a sweat test, and 4 trips to the operating room confirmed, “Lulu has Cystic Fibrosis”.
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. Most people with Cystic Fibrosis carry one form of the F508 gene mutation, and there have been many incredible drugs that have come out to help with their symptoms, and even extend their lives! Unfortunately, Lulu is part of the small percent of CFer’s with two rare mutations, for whom these miracle drugs do not work. The CF Foundation is dedicated to finding a cure for every person with cystic fibrosis, and ultimately a life free from the burden of this disease.
Fun Fact: One way in which doctors test for CF is through a sweat test. They collect sweat, and test it to see if the level of salt is higher than normal. So, sometimes if you kiss Lulu, especially if she was sweating, your lips taste salty like you were swimming in the ocean!"
My Great Strides Story
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.