A Quiet Disparity: Brandon’s Story

September 11, 2012

Brandon is the four-year-old nephew of Daileann Hemmings, RN, BSN, MSN, and Connecticut Health Leadership Fellow Class of 2012. He wants you to know that he is going to a new school this year, and he likes to make “Spiderman fingers” when having his picture taken.

He also has Sickle Cell Disease (SCD), an inherited blood disorder that can cause a shortened life expectancy, extreme pain, even organ death. And if you look at Brandon, you’ll know why Daileann dedicated herself to changing how the health care system manages the disease.

Daileann is a certified intermediate community sickle cell counselor, and Vice President of the Board of Directors for Citizens for Quality Sickle Cell Care, an organization in Connecticut whose mission is “To ensure the availability and accessibility of quality and comprehensive medical care and support services for children and adults in Northern Connecticut with Sickle Cell Disease and other related disorders.”

More than 100,000 Americans are living with SCD, and more than two million Americans carry the trait. Carrying the trait does not make you symptomatic. Where having the trait becomes a concern is when planning a family. If both you and your partner have the sickle cell trait, you have a 25 percent chance with each pregnancy of having a child with SCD. Families can prevent children being born with the disease as long as they are having conversations and getting screened for the trait.

The disparity in SCD is two-fold: historically, it has been believed that SCD only affect people of African descent, marginalizing the disease. The truth is that people of all races can carry the trait, which many people don’t realize, and they don’t undergo screening when deciding to have children.

The second piece of the disparity is that the needs of SCD patients are not always well-understood by providers. SCD changes the shape of the red blood cell from a from a flexible, circular shape into a hard crescent shape – a sickle. The cells can spontaneously become stuck in the joints and cause an unbearable pain crisis, requiring emergency room care. Providers, however, often treat these patients as if they were medication-seeking, and don’t give them the pain medication they need. An untreated crisis can lead to organ failure and death.

In Connecticut, the good news is that systems changes are happening at the hospital level. At Connecticut Children’s Medical Center, University of Connecticut Farmington Hospital, and Yale University, a patient that is identified as having SCD receives immediate care. Daileann herself educates providers so that they understand the needs of SCD patients in crisis.

As Daileann says in the video, awareness of the disease and its complexities is critical, both for prevention and to ensure the appropriate administration of care.

Does someone you know and love have SCD? What other systems changes could we be making in order to create better care, and ultimately, a cure for the disease?

3 Responses to A Quiet Disparity: Brandon’s Story

  1. Shanda Montford says:

    Hello,
    My name is Shanda Montford and I am Sickle Cell Trait Carrier as well as my husband. We knew that we had the trait when we decided to start a family but also knew tha there was a chance that he could be born with just the trait as well. Our son has SIckle Cell Disease SC. One thing that I see which not really impacted is the education of Sickle Cell in the schools. We are doing alot to change the hospitals and will continue to do so but there is not enough education in the schools about Sickle Cell. Yes we have the 504 plan but that is it. I would like to know what exaclty can we do in the schools to education not only the staff but other parents and fellow students as well?

    Thank you for sharing your this information.

    • chf_admin says:

      Hi Shanda,

      Thanks for reading & watching, Shanda. I’m sorry to hear that your son was born with SCD SC. I hope he is doing as well as little Brandon.

      I’ve asked Daileann to weigh in on how educational staff, parents, and fellow students can understand SCD better in the school setting. I assume you mean you’re interested in having them understand the disease so they can better relate to the needs of your son?

      –Jenn

  2. Daileann says:

    Hi Shanda,

    Thank you so much for responding. I spoke with the executive director of CQSCC who shared with me she found the best way to speak to the students in a school is by contacting the principal. The steps she tookwaste
    1. Presenting the information to the principal
    2. Try to set up a lunch and learn with the educators i.e. the teachers of science (biology) classes where genetics will be discussed during the semester(provide the lunch)
    3. Construct your education tool to fit your audience
    4. It has worked for us to attend during science class as a guest speaker

    We are still in the process of trying to contact the president of the PTA to have time during a PTA meeting to educate parents on SCD.
    I hope this helps

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