Sickle cell disease

Common Name(s)

Sickle cell disease, Sickle cell anemia, Hb SS disease

Sickle cell anemia (Hb SS) is a rare genetic condition. Hb SS affects the number or shape of the red blood cells in the body. Normally, the red blood cells are round and donut-shaped. They bring the oxygen we breathe from our lungs to different parts of our body. Those with Hb SS make some red blood cells that are crescent or sickle shaped rather than a round, donut shape. These unusually shaped cells do not last as long as normal red blood cells and die off. This can lead to anemia (a low number of red blood cells). The sickle or crescent shaped cells also tend to get stuck in blood vessels. When this happens, some parts of the body may not get enough blood. If red blood cells are not able to move through the blood vessels, parts of the body cannot get enough oxygen. Therefore, it is very important for our bodies to have an adequate number of red blood cells.

Those affected by Hb SS may develop signs and symptoms a couple of months after birth. The characteristic features of this condition may include pale skin, sleeping longer or more often, tiredness, difficulty breathing, pain or swelling in the hands or feet, and cold hands or feet. If untreated, this disorder can lead to organ failure and death. Many of these complications can be prevented with early detection and lifelong management with appropriate medications, fluids, and blood transfusions. Many babies are screened for Hb SS at birth so that treatment can begin early, however the conditions included in newborn screening differ from state to state. For more information, visit Baby’s First Test. Hb SS is an autosomal recessive trait. A genetic counselor can help you understand the genetics. Also talk with your doctor and specialists to decide on the best treatment plan. Support groups are also a good source of information.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Sickle cell disease" for support, advocacy or research.

Citizens for Quality Sickle Cell Care-SCDAA-Northern, CT Chapter, Inc.

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.

Last Updated: 13 Jan 2014

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North Alabama Sickle Cell Foundation, Inc.

North Alabama Sickle Cell’s mission is to aid and enhance the lives of those affected by Sickle Cell and associated disorders through the provision of supportive services, education and advocacy.

Last Updated: 16 Jan 2014

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Sickle Cell Disease Association of America, Southern Connecticut, Inc.

The Sickle Cell Disease Association of America Southern Connecticut Inc. mission is to provide education,screening, counseling,and support services to persons affected with sickle cell disease and the trait.

Last Updated: 3 May 2014

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William E. Proudford Sickle Cell Fund, Inc.

Our mission is to support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease.

Last Updated: 30 May 2015

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The Baton Rouge Sickle Cell Anemia Foundation, Inc.

The Foundation is proud of its ongoing efforts to meet and exceed its established mission by bringing innovative and creative programs (1) to provide financial and advocacy supportive services to persons diagnosed with sickle cell disease; (2) to provide treatment support to enhance the quality of life for those suffering from sickle cell disease; and (3) to educate the general public about sickle cell disease.

Last Updated: 5 Mar 2013

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American Sickle Cell Anemia Association

ASCAA is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, couseling, and supportive services to individuals and families at-risk for sickle cell disease.

Last Updated: 1 Jun 2015

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Children's Sickle Cell Foundation, Inc.

The mission of the Children’s Sickle Cell Foundation, Inc. (CSCF) is to provide support for children with sickle cell disease (SCD) and their families to help them face the educational, social and economic challenges caused by the disease. Our commitment to sickle cell disease education and community outreach, and support for sickle cell disease research are natural extensions of this mission. CSCF is the sole provider of community based programs for children with SCD in Western Pennsylvania. Some of the programs offered by CSCF are the Educational Support and Learn2Swim.

Last Updated: 11 Mar 2016

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Cochrane Collaboration

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

Last Updated: 12 May 2015

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Hina Patel Foundation

To increase the awareness in Kern County about Sickle Cell Disease and trait and provide accessible services, including education, testing, and counseling with the ultimate goal of enhancing the well-being of the affected people and their families.

Last Updated: 11 Jun 2015

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Sickle Cell Disease Association of America, Inc-Eastern NC Chapter

To improve the quality of life for persons and families affected by sickle cell disease and related genetic disorders

Last Updated: 20 Feb 2013

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Sickle Cell Disease Association of America, Inc.

Our mission is to help improve the quality of life for persons/families affected by the sickle cell syndrome and related genetic disorders.

Last Updated: 1 Jun 2015

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Sickle Cell Disease Association of Illinois

Our primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, the Sickle Cell Disease Association of Illinois (SCDAI) acts as an advocate for improved health care and services for individuals with sickle cell by educating and informing the community through outreach programs.

Last Updated: 4 Oct 2013

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Sickle Cell Disease Foundation of California

To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease and to promote medical research and education to ultimately find a cure.

Last Updated: 27 Mar 2013

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Sickle Cell Society

Our vision is to be the most successful sickle cell organisation nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels. We will be better able to empower and assist people with sickle cell disorders to achieve their full economic and social potential.

Last Updated: 23 Jun 2015

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werathah

To provide support and health education to patients and their families with genetic and congenital disorders

Last Updated: 1 May 2013

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Sickle cell disease" for support, advocacy or research.

Citizens for Quality Sickle Cell Care-SCDAA-Northern, CT Chapter, Inc.

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.

http://www.cqscc.org

Last Updated: 13 Jan 2014

View Details
North Alabama Sickle Cell Foundation, Inc.

North Alabama Sickle Cell’s mission is to aid and enhance the lives of those affected by Sickle Cell and associated disorders through the provision of supportive services, education and advocacy.

http://sicklecellna.org

Last Updated: 16 Jan 2014

View Details
Sickle Cell Disease Association of America, Southern Connecticut, Inc.

The Sickle Cell Disease Association of America Southern Connecticut Inc. mission is to provide education,screening, counseling,and support services to persons affected with sickle cell disease and the trait.

http://www.scdaaofsouthernct.org/

Last Updated: 3 May 2014

View Details
William E. Proudford Sickle Cell Fund, Inc.

Our mission is to support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease.

http://www.wepsicklecell.org

Last Updated: 30 May 2015

View Details
The Baton Rouge Sickle Cell Anemia Foundation, Inc.

The Foundation is proud of its ongoing efforts to meet and exceed its established mission by bringing innovative and creative programs (1) to provide financial and advocacy supportive services to persons diagnosed with sickle cell disease; (2) to provide treatment support to enhance the quality of life for those suffering from sickle cell disease; and (3) to educate the general public about sickle cell disease.

http://brscaf.org

Last Updated: 5 Mar 2013

View Details
Logo
American Sickle Cell Anemia Association

ASCAA is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, couseling, and supportive services to individuals and families at-risk for sickle cell disease.

http://www.ascaa.org

Last Updated: 1 Jun 2015

View Details
Children's Sickle Cell Foundation, Inc.

The mission of the Children’s Sickle Cell Foundation, Inc. (CSCF) is to provide support for children with sickle cell disease (SCD) and their families to help them face the educational, social and economic challenges caused by the disease. Our commitment to sickle cell disease education and community outreach, and support for sickle cell disease research are natural extensions of this mission. CSCF is the sole provider of community based programs for children with SCD in Western Pennsylvania. Some of the programs offered by CSCF are the Educational Support and Learn2Swim.

http://www.cscfkids.org

Last Updated: 11 Mar 2016

View Details
Cochrane Collaboration

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

http://cfgd.cochrane.org

Last Updated: 12 May 2015

View Details
Logo
Hina Patel Foundation

To increase the awareness in Kern County about Sickle Cell Disease and trait and provide accessible services, including education, testing, and counseling with the ultimate goal of enhancing the well-being of the affected people and their families.

http://www.hinapatelfoundation.org

Last Updated: 11 Jun 2015

View Details
Logo
Sickle Cell Disease Association of America, Inc-Eastern NC Chapter

To improve the quality of life for persons and families affected by sickle cell disease and related genetic disorders

http://www.sicklecelleasternnc.org

Last Updated: 20 Feb 2013

View Details
Sickle Cell Disease Association of America, Inc.

Our mission is to help improve the quality of life for persons/families affected by the sickle cell syndrome and related genetic disorders.

http://www.sicklecelldisease.org/

Last Updated: 1 Jun 2015

View Details
Sickle Cell Disease Association of Illinois

Our primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, the Sickle Cell Disease Association of Illinois (SCDAI) acts as an advocate for improved health care and services for individuals with sickle cell by educating and informing the community through outreach programs.

http://www.scdai.org

Last Updated: 4 Oct 2013

View Details
Sickle Cell Disease Foundation of California

To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease and to promote medical research and education to ultimately find a cure.

http://www.scdfc.org/

Last Updated: 27 Mar 2013

View Details
Logo
Sickle Cell Society

Our vision is to be the most successful sickle cell organisation nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels. We will be better able to empower and assist people with sickle cell disorders to achieve their full economic and social potential.

http://www.sicklecellsociety.org/

Last Updated: 23 Jun 2015

View Details
werathah

To provide support and health education to patients and their families with genetic and congenital disorders

http://www.werathah.com

Last Updated: 1 May 2013

View Details

 

General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Sickle cell disease" returned 1686 free, full-text research articles on human participants. First 3 results:

Sickle Cell Disease - A History of Progress and Peril.
 

Author(s): Keith Wailoo

Journal: N. Engl. J. Med.. 2017 03;376(9):805-807.

 

Last Updated: 1 Mar 2017

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Head circumference of children with sickle cell disease in Lagos, Nigeria.
 

Author(s): Idowu Odunayo Senbanjo, Kazeem Adeola Oshikoya, Mohammed Salisu, Ijeoma Nnenna Diaku-Akinwumi

Journal:

 

Growth retardation and under-nutrition are common in children with sickle cell disease (SCD). The aim of this study was to compare the head circumference (HC) of SCD children and non-SCD children and to determine the effect of malnutrition on head circumference of children with SCD.

Last Updated: 3 Feb 2017

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Prevalence of psychological symptoms among adults with sickle cell disease in Korle-Bu Teaching Hospital, Ghana.
 

Author(s): Michael Tetteh Anim, Joseph Osafo, Felix Yirdong

Journal:

 

Previous research revealed high prevalence of psychological symptoms among sickle cell disease (SCD) patients in the West and Europe. In some Black SCD populations such as Nigeria and Jamaica, anxiety and depression had low prevalence rates compared to Europe. With difficulty locating ...

Last Updated: 11 Nov 2016

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Sickle cell disease" returned 173 free, full-text review articles on human participants. First 3 results:

Regular long-term red blood cell transfusions for managing chronic chest complications in sickle cell disease.
 

Author(s): Lise J Estcourt, Patricia M Fortin, Sally Hopewell, Marialena Trivella, Ian R Hambleton, Gavin Cho

Journal:

 

Sickle cell disease is a genetic haemoglobin disorder, which can cause severe pain, significant end-organ damage, pulmonary complications, and premature death. Sickle cell disease is one of the most common severe monogenic disorders in the world, due to the inheritance of two abnormal ...

Last Updated: 1 Jun 2016

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Preoperative blood transfusions for sickle cell disease.
 

Author(s): Lise J Estcourt, Patricia M Fortin, Marialena Trivella, Sally Hopewell

Journal:

 

Sickle cell disease is one of the commonest severe monogenic disorders in the world, due to the inheritance of two abnormal haemoglobin (beta globin) genes. Sickle cell disease can cause severe pain, significant end-organ damage, pulmonary complications, and premature death. Surgical ...

Last Updated: 2 May 2016

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Cardiomyopathy With Restrictive Physiology in Sickle Cell Disease.
 

Author(s): Omar Niss, Charles T Quinn, Adam Lane, Joshua Daily, Philip R Khoury, Nihal Bakeer, Thomas R Kimball, Jeffrey A Towbin, Punam Malik, Michael D Taylor

Journal: JACC Cardiovasc Imaging. 2016 Mar;9(3):243-52.

 

The aim of this study was to identify a unifying cardiac pathophysiology that explains the cardiac pathological features in sickle cell disease (SCD).

Last Updated: 11 Mar 2016

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Sickle Cell Disease Biofluid Chip Technology (SCD BioChip)
 

Status: Recruiting

Condition Summary: Sickle Cell Disease

 

Last Updated: 6 Jul 2016

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Last Updated: 21 Jun 2016

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Last Updated: 16 Oct 2015

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