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Sickle Cell Disease

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What is sickle cell disease (SCD)?

Sickle cell disease (SCD) is an inherited disease that changes the way hemoglobin – a protein in the red blood cells that carries oxygen – is made. Normal red blood cells are round and soft, but in a person who has sickle cell disease, the red blood cells become shaped like the letter C, or a sickle.

The red blood cells in SCD are also sticky and rigid and can block blood flow, leading to severe pain attacks, or crises, as well as crises in the chest and spleen. The blocked blood flow can also cause damage to organs, such as the kidney, brain, heart, and lungs.

Sickle cell disease is a serious, life-long disease that requires daily care. Improper care of SCD may cause serious health problems, long-term disability, or complications that can be life-threatening. The life expectancy for those with SCD has been steadily improving with proper care and treatment.

How do I know if my child has SCD?

When a child has SCD, early diagnosis can help prevent complications. In the United States, every newborn is tested for SCD as part of a regular newborn screening program. For the screening, a nurse draws blood from a heel prick of your newborn and places drops of the blood on special testing paper. The hemoglobin is then tested in the lab.

If your baby is found to have SCD, your doctor will follow up with you directly to let you know the results, and your baby will be retested.

Babies can also be diagnosed while still in the uterus, sometimes as early as 8 to 10 weeks into the pregnancy. This testing is done using the amniotic fluid or tissue taken from the placenta.

What is comprehensive care for SCD?

University of Iowa Stead Family Children’s Hospital is home to the only comprehensive pediatric care center for sickle cell disease in Iowa. The team includes:

  • Dental hygienist
  • Genetic counselors
  • Hematologists
  • Medical assistants
  • Neuropsychologists
  • Nurse practitioners
  • Research coordinators
  • Social workers

Comprehensive care focuses on developing meaningful partnerships with your family, your child’s primary care doctor, and other specialists.

What services are available?

Our specialists will work with you and your child to explain how to manage SCD and its complications, how to detect and prevent complications through screenings and diagnostic testing, and will coordinate your care among all specialties to make scheduling, and potential travel, easier on you and your family.

Our genetic counselors will meet with you and your child to discuss how SCD is passed on through families – something that may help make future family planning decisions with full knowledge of the risks.

We also offer evaluations for early recognition of impairments and cognitive or learning disabilities, as well as a psychosocial evaluation and counseling by a social worker to support families with mental health, financial, and social concerns.

There are opportunities to participate in clinical trials and cutting-edge research to further developments in the care of children with SCD. 

Resources

  • www.sicklecelldisease.org
  • www.nhlbi.nih.gov/health/health-topics/topics/sca

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Our Care Team

David Claassen, MD, PhD portrait

David
Claassen
MD, PhD

  • Cancer and Blood Disease
  • Department of Pediatrics
4.75 out of 5 (195 ratings)
Anjali A. Sharathkumar, MBBS, MD portrait

Anjali A.
Sharathkumar
MBBS, MD

  • Cancer and Blood Disease
  • Department of Pediatrics
4.68 out of 5 (164 ratings)
Janice Staber, MD portrait

Janice
Staber
MD

  • Cancer and Blood Disease
  • Department of Pediatrics
4.66 out of 5 (97 ratings)

Marie Shinkle, PharmD, BCOP, BCPPS, BCACP portrait

Marie
Shinkle
PharmD, BCOP, BCPPS, BCACP

Kelly Marine, ARNP portrait

Kelly
Marine
ARNP

  • Department of Pediatrics
  • Cancer and Blood Disease

MA

Missy
Aitchison
RN, BSN

KE

Kris
Elijah
RN, BSN

Michelle Krantz, RN portrait

Michelle
Krantz
RN

  • Cancer and Blood Disease

Renee Lenth, LISW portrait

Renee
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LISW

  • Department of Pediatrics
Not sure which Sickle Cell Disease provider is right for you?
When you call 1-888-573-5437 we'll help you find a provider who meets your needs.
Call 1-888-573-5437

Locations and Offices

Level 11: University of Iowa Dance Marathon Pediatric Cancer Center

Level 11
1-319-356-2229
Clinic
In University of Iowa Stead Family Children's Hospital
200 Hawkins Drive, Iowa City, IA 52242

General Pediatrics - Iowa River Landing

Second Floor
1-319-467-2000
Clinic
In Iowa River Landing
105 East 9th Street, Coralville, IA 52241

Pediatric Specialties - Cedar Falls - Orchard Drive

1-855-543-2884
Clinic
In Cedar Falls - Orchard Drive
2624 Orchard Drive, Cedar Falls, IA 50613

Pediatric Specialty Services - Bettendorf

Suite 400
1-855-543-2884
Clinic
In Bettendorf - Lincoln Road
865 Lincoln Road, Bettendorf, IA 52722
Clinical Trials currently in progress
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Patient Stories

UI researcher talks of personal experience with sickle cell disease
August 7, 2017
Dr. Butali shares the story of his daughter, Amirah, and her struggles with sickle cell disease before getting a life-changing bone marrow transplant ...
Kinzie Hemann
August 29, 2016
Days after her first birthday, Kinzie was diagnosed with von Willebrand disease Type 3, a genetic blood disorder caused by a missing protein, which le...
Browse more stories

Educational Resources

Hematology and Oncology: PICU Handbook
Hematology: NICU Handbook

200 Hawkins Drive
Iowa City, IA 52242
United States

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