Show notes
It's another day in September, which means we are going to be recognizing National Sickle Cell Awareness Month. Sickle Cell Disease is an inherited blood disorder in which blood cells may become sickle shaped and harden, causing a lot of pain. On this episode, I am bringing back Lisa's Story: A Daughter with Sickle Cell Disease. I want to bring to light sicklecelldisease.org's theme for 2021, which is Sickle Cell Matters. This impactful disease can permeate every part of a person's life, from deciding if they will have children and pass on the trait, to dealing with pain crises, and coping with someone passing away due to sickle cell disease. These are all things that Lisa had to navigate as she was coming into motherhood, and as you listen to her story, I want you to really understand that sickle cell matters. It matters to know the facts. It matters to be aware of what is happening. It matters to be supportive to families.
In this episode, we talk about…
[4:23] Description and prevalence of sickle cell disease
[5:24] Lisa's journey to motherhood
[15:24] Finding out that her daughter has sickle cell disease
[22:29] Learning more about sickle cell disease
[26:19] How Lisa handles her daughter's pain crises
[34:53] Coping with having a child with sickle cell disease
[39:07] Lisa's advice for other parents of children with sickle cell disease
[42:51] What Lisa has learned from her daughter
[44:31] Lisa's favorite sickle cell disease resources
Connect with Lisa:
https://www.instagram.com/thelisasykes
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
- 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface.
- 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better.
- 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child.
- 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare
Learn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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