Sickle Cell Diseases and Hemoglobinopathies

 

Sickle cell disease and other hemoglobinopathies are inherited disorders that affect red blood cells. Sickle Cell disease can cause severe pain, frequent infections, and sometimes death.

Treating infants with the disorder with antibiotics can greatly lower the risk of infections and other problems.

Some infants have a hemoglobin trait, which means they do not have the disease, but their children could inherit it. These disorders occur in about 1 in every 10,000 births in Washington State.

Sickle cell results for college athletics

The Newborn Screening Program encourages all patients to discuss any concerns they have regarding newborn screening results with their health care provider or with follow-up staff at the Newborn Screening Program.

Hemoglobinopathies (hb)

Genetic Counseling Resources for Hemoglobinopathies (PDF)

Clinical and Laboratory Resources for Sickle Cell and other Hemoglobinoapthies (PDF)

* Mary Bridge Sickle Cell Program - Mary Bridge Health Center in Tacoma

* Odessa Brown Children's Clinic - Sickle Cell Anemia Clinic in Seattle

* Northwest Sickle Cell Collaborative – State-wide Collaborative of Sickle Cell Providers and Families

Alpha Thalassemia (Barts)

Hemoglobin Bart's Fact Sheet (PDF)

Hemoglobin Alpha Thalassemia Parent Pamphlet (PDF)

Hemoglobin Alpha Thalassemia Pamphlet--Cambodian (PDF)

Hemoglobin Alpha Thalassemia Pamphlet--Chinese (PDF)

Hemoglobin Alpha Thalassemia Pamphlet--Laotian (PDF)

Hemoglobin Alpha Thalassemia Pamphlet--Spanish (PDF)

Hemoglobin Alpha Thalassemia Pamphlet--Vietnamese (PDF)

* Cooley's Anemia Foundation - Comprehensive Thalassemia Page

* Standards of Care - Thalassemia (PDF) –Children's Hospital & Research Center Oakland

Beta Thalassemia

Hemoglobin Beta Thalassemia Parent Pamphlet (PDF)

* Cooley's Anemia Foundation - Comprehensive Thalassemia Page

Hemoglobin C

Hemoglobin C Fact Sheet (PDF)

Hemoglobin C Trait Parent Pamphlet (PDF)

Hemoglobin D

Hemoglobin D Fact Sheet (PDF)

Hemoglobin D Trait Parent Pamphlet (PDF)

Hemoglobin E

Hemoglobin E Fact Sheet (PDF)

Hemoglobin E Trait Parent Pamphlet (PDF)

Hemoglobin E Trait Pamphlet (PDF)--Cambodian

Hemoglobin E Trait Pamphlet (PDF)--Chinese

Hemoglobin E Trait Pamphlet (PDF)--Laotian

Hemoglobin E Trait Pamphlet (PDF)--Vietnamese

Hemoglobin S

Hemoglobin S Fact Sheet (PDF)

Hemoglobin S Trait Parent Pamphlet (PDF)

Hemoglobin S Trait Pamphlet - Somali (PDF)

Hemoglobin S Trait Pamphlet - Spanish (PDF)

Sickle Cell Diseases

Hemoglobin Sickle C Disease (PDF)

* Aplastic Crisis (HTML) – Texas Department of State Health Services

* Chest Syndrome (HTML) - Texas Department of State Health Services

* Mary Bridge Children's Hospital Comprehensive Sickle Cell Program (HTML)

* Management and Therapy of Sickle Cell Disease (PDF) – National Heart, Lung, and Blood Institute

* Parent's Handbook Part 1: Birth to Six Years - Sickle Cell Disease (PDF) – California Department of Public Health

* Parent's Handbook Part 2: Six to Eighteen Years - Sickle Cell Disease (PDF) – California Department of Public Health

* Pain in the Child with Sickle Cell Disease (HTML) - Texas Department of State Health Services

* Pneumococcal Infection and Penicillin (HTML) - Texas Department of State Health Services

* Priapism (HTML) - Texas Department of State Health Services

* Sickle Cell Anemia and Stroke (HTML) - Texas Department of State Health Services

* Sickle Cell Anemia: A Parent's Guide for the School Age Child (HTML) - Texas Department of State Health Services

* Splenic Sequestration Crisis (HTML) -- Texas Department of State Health Services

* Critical Elements of Care for Sickle Cell (PDF) – Seattle Children's Hospital

* Links to external resources and links are provided as a public service and do not imply endorsement by the Washington State Department of Health.

Requesting copies of sickle cell results for college athletics

The Washington State Newborn Screening (NBS) Program has been screening all newborns for sickle cell disease and other inherited hemoglobin conditions since 1991 with the following caveats:

  1. May 1991 in Pierce County
  2. August 1991 in King County
  3. November 1991 Statewide

The testing also detects healthy babies who are carriers of sickle cell disease and other inherited hemoglobin conditions.

Instructions

1. If you were born on or after MARCH 1, 1998, you may obtain results using either Option 1 or Option 2 listed below.

2. If you were born before MARCH 1, 1998, you may only obtain results using OPTION 2. (See below)

Option 1

Have your healthcare provider call our office at 206-418-5410 to request the newborn screening results. We will fax a copy to their office, which they can pass along to you. You will be responsible for forwarding the results to the college in an acceptable format.

*This option is free of charge.

**Please note by selecting this option we will send newborn screening results for ALL conditions, not just hemoglobin results

Option 2

To have our office send a letter documenting your hemoglobin results directly to the college, follow these instructions:

  • Print and complete the Authorization form (have your parent or legal guardian sign if you are under 18 years old)
  • Mail the ORIGINALLY signed form to the NBS program at the address located in the letterhead of the authorization form
  • Include a check for the following amount:
    For births occurring prior to March 1, 1998 $17.50
    For births occurring on or after March 1, 1998 $6.00

Fees

Fees cover the cost of searching, reviewing, and mailing results. Results for births prior to March 1998 are not available electronically and require an archive search of paper records, hence the higher cost.

Results

Results will be sent to the institution indicated in Section 2 of the request form.

For questions please contact our office at 206-418-5410 or toll free at 1-866-660-9050 or NBS.Prog@doh.wa.gov.

PLEASE NOTE: Washington law prohibits health insurers from discriminating against anyone based on positive results on a genetic test. In addition, Washington law does not allow the use of genetic testing results in employment