More than 100,000 Americans are living with Sickle Cell Disease. The impact of this hereditary disorder reaches beyond those individuals to their families, friends, and communities. As a community organization we at Citizens for Quality Sickle Cell Care, Inc. work tirelessly to ensure that people with Sickle Cell Disease get their voices heard in all aspects of care. We want our consumers to be able to advocate for themselves.
 

New England Sickle Cell Institute

At the Lea's Foundation Center for Hematologic Disorders

A Comprehensive Approach

The New England Sickle Cell Institute at UConn Health is a regional Adult Sickle Cell Center. It is dedicated to providing quality patient care to adults living with sickle cell disease with a focus on research, education and advocacy.

The Best Possible Care

Making choices about your treatment can sometimes be difficult and you want to make sure you receive the best of care. As a patient at the New England Sickle Cell Institute, we provide full comprehensive sickle cell care that focuses on prevention as well as acute care.

You will have access to a team of expert hematologists, pain management specialists, nurse practitioners, nurses, social workers, researchers, and a patient navigator that can assist you with the medical and emotional aspects of sickle cell disease. You are a team member in developing your plan of care.

Services Offered

Our Center offers simple and exchange blood transfusions. We are the only site in the region to offer erythrocytapheresis. Other services include:

  • Diagnosis of sickle cell disease, thalassemia, and other hemoglobinopathies

  • Ongoing ambulatory care and treatment for patients with sickle cell disease

  • Same day pain episode management utilizing a day hospital strategy

  • Preventative health

  • Individualized emergency room pain management plan

  • Management of pain, iron overload and other sickle cell related complications

We offer expertise in the management of:

  • Chronic pain

  • Iron overload

  • Priapism

  • Retinopathy

  • Chronic ulcers

  • Nephropathy

  • Pulmonary hypertension

  • Other complications

Our Team

Biree Andemariam, M.D. Biree Andemariam, M.D.Biree Andemariam, M.D., is the director of the New England Sickle Cell Institute. She is a graduate of the Tufts University School of Medicine where she graduated with research honors. She completed her internship, residency and fellowship training at New York Presbyterian Hospital–Weill Medical College of Cornell University.

Other team members include:

  • Pain management specialists

  • Nurse practitioners

  • Nurses

  • Social workers

  • Researchers

  • Patient navigator

  • Community advocates

Community Outreach and Alliances

  • Alliance with community-based sickle cell disease organizations

  • Participation in the statewide Sickle Cell Disease Stakeholders Group

  • Department of Public Health

  • Connecticut Children’s Medical Center

  • Federally qualified community health centers

Research

In addition to caring for individuals with sickle cell disease, we conduct research aimed at developing new treatments for the disease.

For more information on research opportunities, call 860-679-3327 or email  This email address is being protected from spambots. You need JavaScript enabled to view it. .

 


 
 
What is Sickle Cell

sickle cellSickle Cell Disease is a group of inherited red blood cell disorders. Normal red blood cells are round like doughnuts Healthy Cell, and they move through small blood tubes in the body to deliver oxygen. Sickle red blood cells Sickle Cell become hard, sticky and shaped like sickles used to cut wheat. When these hard and pointed red cells go through the small blood tube, they clog the flow and break apart. This can cause pain, damage and a low blood count, or anemia.

What makes the red cell sickle?

There is a substance in the red cell called hemoglobin that carries oxygen inside the cell. One little change in this substance causes the hemoglobin to form long rods in the red cell when it gives away oxygen. These rigid rods change the red cell into a sickle shape Sickle Cell instead of the round shape Healthy Cell.

How do you get sickle cell disease?

You inherit the altered hemoglobin from your parents, who may be carriers with sickle cell trait or parents with sickle cell disease. You can not catch it. You are born with the sickle cell hemoglobin and it is present for life. If you inherit only one sickle gene, you have sickle cell trait. If you inherit two sickle cell genes you have sickle cell disease.

Is it only in African Americans?

Sickle cell is in many nationalities including African Americans, Arabs, Greeks, Italians, Latin Americans, and those from India. You can be Caucasian and have sickle cell disease or trait. All races should be screened for this hemoglobin at birth.

How can I be tested?

A simple blood test called the hemoglobin electrophoresis can be done by your doctor or local sickle cell non-profit organization. This test will tell if you are a carrier of the sickle cell trait or if you have the disease.

Newborn Screening

Most States now perform the sickle cell test when babies are born. The simple blood test will detect sickle cell disease or sickle cell trait . Other types of traits that may be discovered include:

  • Hemoglobin C trait
  • Hemoglobin E trait
  • Hemoglobin Barts - which indicates an alpha thalassemia trait
  • Beta thalassemia trait
What is Sickle Cell trait?

Sickle cell trait is found in a person who carries one sickle hemoglobin producing gene inherited from their parents and one normal hemoglobin gene. Normal hemoglobin is called type A. Sickle hemoglobin called S. Sickle cell trait is the presence of hemoglobin AS on the hemoglobin electrophoresis. This will NOT cause sickle cell disease. Other hemoglobin traits common in the United States are AC and AE traits.

Why is it important to know?

A person inherits genes that produce hemoglobin from his/her parents. It is important to identify people with a hemoglobin trait so they will be aware of their risk of having children with sickle cell disease.

If one parent has sickle cell trait and the other parent has normal hemoglobin, there is a 50 percent (1 in 2) chance with each pregnancy that the child will be born with sickle cell trait.

sickletrait1

If both parents have sickle cell trait or another hemoglobin trait, there is a 25 percent chance (1 in 4) with each pregnancy that the child will have sickle cell disease.

sickletrait2

Health Guidelines

Get regular checkups from knowledgeable health care providers.

If your baby has a sickle cell disorder, be sure he or she receives the appropriate immunizations at the correct intervals.

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Visit a genetic counselor; counseling and education regarding the trait are important because the sickle gene can be passed to a carrier’s children.

Be sure children with sickle cell disease begin taking penicillin by 3 months of age and continue until at least 5 years of age.

Take multivitamins and folic acid supplements.

Drink plenty of water daily (8-10 glasses).

Avoid over-exertion and stress.

Avoid too hot or too cold temperatures.

While a special diet is not necessary, eat three well-balanced meals each day.

Keep a positive mental attitude