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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Sep 15, 2021

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’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


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