Patient & Family Information

The information below is provided for your review and convenience. Please contact your our Colorado Sickle Cell Providers if you have any questions or require additional information. 

Providers

  • Adult Sickle Cell Provider: Kathryn Hassell  
    Adult Clinic @ University of Colorado Hospital 720.848.0300

  • Pediatric Sickle Cell Provider: Rachelle Nuss
    Pediatric Clinic @ Children's Hospital Colorado 720.777.6740  

Telephone Consultation

The Center staff provides telephone consultation to providers throughout the Rocky Mountain Region. For emergencies, consultation is available around the clock.

After Hour Emergency

  • Pediatrics - The Children's Hospital: 720.777.1234
  • Adults - University of Colorado Hospital: 720.848.0000

What is Sickle Cell Disease?

Sickle Cell Disease is a genetic disorder caused by an inherited abnormality of hemoglobin, the oxygen-carrying protein in red blood cells.The disease is characterized by anemia, acute complications that can become rapidly life threatening, and the development of chronic organ damage. Many patients suffer from episodes of severe, often excruciating pain that can last for days and require hospitalization. 

Other important problems include life-threatening infections, anemic crises, pneumonia or acute chest syndrome and stroke. Adults with Sickle Cell Disease suffer the consequences of chronic damage to the heart, lungs, liver, kidneys. Painful skin ulcers develop over the ankles and may fail to heal. Specialized comprehensive care markedly reduces morbidity and mortality.  

Who is Affected?

Sickle Cell Disease is an inherited disorder that occurs most commonly in persons of African American, Mediterranean, Middle Eastern, Indian, Caribbean, and Central and South American ancestry. One in every 400 African American infants has Sickle Cell Disease, with approximately 2000 affected infants born in the United States each year.

What is Being Done in Colorado?

The Colorado Sickle Cell Treatment and Research Center was established at the University of Colorado School of Medicine in 1974. At that time, approximately 50% of children with Sickle Cell Disease died before reaching adulthood. Since then, the outlook has improved greatly. 

  • A simple screening test detects affected infants at birth.
  • Comprehensive medical care provided by the Center staff has significantly improved the quality of life and life expectancy has more than doubled.
  • Many children have been cured by bone marrow transplantation and gene therapy research trials will be available soon.

Newborn Screening Follow-up Program

  1. The Center works closely with the Newborn Screening Laboratory of the Colorado Department of Public Health and Environment to ensure that the families of infants with Sickle Cell Disease receive appropriate education, counseling, and referral for comprehensive care.
  2. To provide educational materials through the primary care providers for the 900-1000 infants born each year in Colorado and Wyoming with other hemoglobinopathies or hemoglobin traits.
  3. Counseling is provided to parents who call with questions or requesting additional information.

See the Newborn Screening Program page for more information.

Medical Treatment

The staff of the Center provides a full range of outpatient and inpatient medical and psychosocial services to patients throughout Colorado. In Denver children receive treatment at The Children's Hospital and adults receive care at the University of Colorado Hospital. In addition, outreach clinics are held throughout the year in Colorado Springs.

Comprehensive Care

The key to obtaining optimal outcomes for patients with Sickle Cell Disease is enrollment in a program of specialized comprehensive care provided by a multi disciplinary team of providers with expertise in Sickle Cell Disease. At the Center, comprehensive care includes extensive patient and family education; psychosocial support; and periodic medical evaluations to review disease manifestations; document important baseline physical findings and laboratory values; monitor nutrition, growth, development, and educational achievement; and detect early signs of organ damage. In addition, patients are periodically evaluated for specific therapies such as chronic transfusions, Hydroxyurea, or bone marrow transplantation.

Acute Illness

Acute illness characterized by common signs and symptoms such as fever, cough, abdominal pain, pallor and lump can become life threatening. Thus the Center provides outpatient and inpatient evaluation and treatment of acute illnesses. Treatment is available around the clock for children at The Children's Hospital and for adults at the University of Colorado Hospital. The Center supports other healthcare providers who treat sickle cell disease by providing detailed clinical care paths for the treatment of common complications and baseline information about individual patients on medical alert cards.

Genetic Counseling, Prenatal Diagnosis, and Pregnancy Management

The staff works closely with specialists in genetics and prenatal diagnosis at the University of Colorado Hospital to provide the education and counseling needed for informed reproductive decision making. Pregnancy is often associated with an increased frequency of complications of Sickle Cell Disease, but the majority of pregnancies in women with Sickle Cell Disease, managed through the Center, have a successful outcome for both the mother and infant.