Sickle Cell Disease
Sickle cell disease is a genetic condition that affects the shape of red blood cells. Normally, red blood cells are soft and round, which helps them move easily through the body and deliver oxygen.
Sickle cell disease is an inherited condition that changes the shape of red blood cells. Instead of being soft and round like healthy cells—which allows them to travel smoothly through blood vessels and carry oxygen—these cells become stiff and crescent-shaped when oxygen levels drop. This happens because a protein inside the cells, called hemoglobin S, clumps together and forms rigid structures. The misshapen cells can block small blood vessels, slowing or stopping blood flow and limiting oxygen delivery to tissues. As a result, people with sickle cell disease may experience episodes of pain, fatigue, and organ damage.
Most episodes of pain can’t be predicted. But sometimes, pain may be triggered by things like infections, dehydration, cold or windy weather, or traveling to places at high altitudes.
Sickle cell disease is more common in people of African, Mediterranean, and Middle Eastern backgrounds.
Blood transfusions may be used to treat anemia and reduce stroke risk. Pain crises are managed with medications, including pain medicines, hydration, and supportive therapies (e.g., heat, rest). If chronic pain develops, different medications can be used along with physical and psychological therapies. Regular check-ups, hydration, nutrition, and sleep are all important components of sickle cell disease management.
Pain episodes (pain crises) – Sudden pain that can occur anywhere in the body, often in the chest, arms, or legs. Pain may be mild to severe and last for hours to days.
Fatigue – Feeling very tired or weak is common due to chronic anemia (low red blood cell count).
Shortness of breath – Caused by anemia or complications affecting the lungs.
Frequent infections – SCD can affect the spleen, which helps fight infections, making individuals more prone to illnesses.
Yellowing of the skin and eyes (jaundice) – Due to the breakdown of sickled red blood cells.
Acute Chest Syndrome – A serious complication that feels like pneumonia and can include chest pain, coughing, difficulty breathing, and fever. It is a leading cause of hospitalization.
Avascular necrosis (especially in the hips and shoulders) – Reduced blood flow to bones can lead to bone damage, joint pain, and loss of movement over time.
Chronic pain – In some people, pain becomes persistent and may be related to bone or joint damage.
Delayed growth or puberty – Due to chronic anemia and nutritional demands.
Vision problems – Tiny blood vessels in the eyes may become blocked, leading to vision loss over time.
Stroke – Especially in children and young adults, due to blocked blood vessels in the brain.
Non- Pharmacological Management of Sickle Cell Pain
Non- Pharmacological Management of Sickle Cell Pain
Topic
Presented by: Beatrice Kahenya (MScN, PHC-NP) and Lance Archer, moderated by Amos Tunji-Ajayi (MPH, SCAGO Education Coordinator) during the 2023 Sickle Cell Summit Ontario.
Summary: This 50-minute video is a great recording of psychosocial track 1 of the 2023 Sickle Cell Summit Ontario. Two professionals who live with SCD talk about non- pharmacological management of sickle cell pain.
The first speaker (Beatrice Kahenya) talks about the differences between acute and chronic pain, exploring when non-pharmacological measures fit in and the top 3 non- pharmacological modalities from a literature and clinician perspective. (Starts at 5:04)
The second speaker (Lance Archer) provides the lived experience perspective of using non-pharmacological interventions for managing Sickle Cell pain. (Starts at 24:10)
Non- Pharmacological Management of Sickle Cell Pain offers
Sickle Cell Disease Information for Patients and Caregivers
Sickle Cell Disease Information for Patients and Caregivers
Topic
Provided by: Sickle Cell Awareness Group of Ontario (SCAGO).
Summary: This page on SCAGO website provides a variety of information on Sickle Cell Disease. You will find articles to read or download on different topics including adhering to treatment, blood transfusions, Covid-19, iron overload, and much more.
Sickle Cell Disease Information for Patients and Caregivers offers
Inspirational Stories from Canadians living with Sickle Cell Disease
Inspirational Stories from Canadians living with Sickle Cell Disease
Topic
Provided by: Sickle Cell Awareness Group of Ontario (SCAGO).
Summary: Visit this page on the SCAGO website to understand the intricacies of the overall impact of Sickle Cell Disease, from the perspective of individuals with lived experience and siblings of those affected. These stories are presented as short videos or articles.
Inspirational Stories from Canadians living with Sickle Cell Disease offers
Sickle Cell Disease Association of Canada
Sickle Cell Disease Association of Canada
Topic
Provided by: Sickle Cell Disease Association of Canada
Summary: The Sickle Cell Disease Association of Canada (SCDAC), established in 2012, is committed to raising awareness of sickle cell disease by improving the identification, diagnosis and treatment of this disease, with the goal of improving the quality of life for those affected by it and their families.
To achieve its mission, AAFC/SCDAC supports the development and growth of its member organizations in Canada and facilitates their collaborative efforts. Visit their website to learn more.
Sickle Cell Disease Association of Canada offers
How To Reduce Sickle Cell Crisis & Hospitalizations
How To Reduce Sickle Cell Crisis & Hospitalizations
Topic
Provided by: Sickle Cell Association of Ontario
Summary: The Sickle Cell Association of Ontario hosted an interview with Dr. Marjorie Brewer, a physician and patient engagement advocate who lives with Sickle Cell Disease. Over the 2-hour recording, hear her own story along with her expert advice on reducing crises and hospitalizations with self-care and wellness techniques.
How To Reduce Sickle Cell Crisis & Hospitalizations offers
Mindful Mondays for Sickle Cell Disease
Mindful Mondays for Sickle Cell Disease
Topic
Provided by: Sickle Cell Disease Association of America, Inc.
Summary: Mindful Mondays is a series of short video sessions, designed to introduce and promote the practice of mindfulness and well-being to those living with Sickle Cell Disease, their caregivers and to all, through breathwork, affirmations and mindfulness techniques. Join Dr. Marjorie Brewer and the Sickle Cell Disease Association of America community and enjoy these Mindful Mondays sessions.
Mindful Mondays for Sickle Cell Disease offers
My SleepWell
My SleepWell
Topic
Sleep
Developed by: Drs. David Gardner and Andrea Murphy from Dalhousie University, Halifax, Nova Scotia, Canada and contributed to by psychologists, psychiatrists, family doctors, pharmacists, people who live with insomnia, researchers, and sleep experts to make sure that our recommendations and content are accurate and practical.
Summary: Sleepwell has two main goals: 1) to help people with insomnia get their sleep back without medications; and 2) to help people stop taking sleeping pills safely and effectively. Sleepwell recommends CBTi (cognitive behavioural therapy for insomnia) because it has excellent evidence that it works. The challenge for many is getting access to CBTi. This is where Sleepwell comes in. The website includes a highly scrutinized short list of recommended CBTi resources to help get you started without delay. Their recommendations take a self-help approach to CBTi rather than requiring that a therapist be involved, which is also a great option but not available to most people.
My SleepWell offers
Articles Tools and Resources
IMPACT Program
IMPACT Program
Topic
PainDeveloped by: A multidisciplinary group of researchers and clinicians along with people with lived experience led by Dr. Brigitte Sabourin and Dr. Renée El-Gabalawy at the University of Manitoba in Winnipeg, Manitoba, and funded by the Health Science Centre (HSC) Foundation.
Summary: The IMPACT program is based on the scientifically proven approach called Acceptance and Commitment Therapy (ACT) for chronic pain. There have been over 100 randomized controlled trials supporting the many benefits of ACT for chronic pain including improved mental health, better quality of life, lower disability related to pain, higher self-efficacy and decreased fear of being active.
By completing the IMPACT program,
- You will explore what your personal values are and what REALLY matters to you;
- You will learn tools that will help you be less controlled by chronic pain and the suffering that often comes with it;
- It will help you commit to living a life based on your own personal values;
- It will help you learn about the role of sleep, communication and relationships, and medications in chronic pain management.
Note: A Power Over Pain Portal account is required to partake in the course.
IMPACT Program offers
Self-directed Courses
Palouse Mindfulness
Palouse Mindfulness
Topic
Mindfulness
This online Mindfulness-Based Stress Reduction (MBSR) course is 100% free, created by a fully certified MBSR instructor, and is based on the program founded by Jon Kabat-Zinn at the University of Massachusetts Medical School. More than 7,000 graduates from 100 countries have completed all the course requirements.
Palouse Mindfulness offers
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About
Sickle cell disease is an inherited condition that changes the shape of red blood cells. Instead of being soft and round like healthy cells—which allows them to travel smoothly through blood vessels and carry oxygen—these cells become stiff and crescent-shaped when oxygen levels drop. This happens because a protein inside the cells, called hemoglobin S, clumps together and forms rigid structures. The misshapen cells can block small blood vessels, slowing or stopping blood flow and limiting oxygen delivery to tissues. As a result, people with sickle cell disease may experience episodes of pain, fatigue, and organ damage.
Most episodes of pain can’t be predicted. But sometimes, pain may be triggered by things like infections, dehydration, cold or windy weather, or traveling to places at high altitudes.
Sickle cell disease is more common in people of African, Mediterranean, and Middle Eastern backgrounds.
Blood transfusions may be used to treat anemia and reduce stroke risk. Pain crises are managed with medications, including pain medicines, hydration, and supportive therapies (e.g., heat, rest). If chronic pain develops, different medications can be used along with physical and psychological therapies. Regular check-ups, hydration, nutrition, and sleep are all important components of sickle cell disease management.
Symptoms
Pain episodes (pain crises) – Sudden pain that can occur anywhere in the body, often in the chest, arms, or legs. Pain may be mild to severe and last for hours to days.
Fatigue – Feeling very tired or weak is common due to chronic anemia (low red blood cell count).
Shortness of breath – Caused by anemia or complications affecting the lungs.
Frequent infections – SCD can affect the spleen, which helps fight infections, making individuals more prone to illnesses.
Yellowing of the skin and eyes (jaundice) – Due to the breakdown of sickled red blood cells.
Acute Chest Syndrome – A serious complication that feels like pneumonia and can include chest pain, coughing, difficulty breathing, and fever. It is a leading cause of hospitalization.
Avascular necrosis (especially in the hips and shoulders) – Reduced blood flow to bones can lead to bone damage, joint pain, and loss of movement over time.
Chronic pain – In some people, pain becomes persistent and may be related to bone or joint damage.
Delayed growth or puberty – Due to chronic anemia and nutritional demands.
Vision problems – Tiny blood vessels in the eyes may become blocked, leading to vision loss over time.
Stroke – Especially in children and young adults, due to blocked blood vessels in the brain.
Resources for Sickle Cell Disease
Non- Pharmacological Management of Sickle Cell Pain
Non- Pharmacological Management of Sickle Cell Pain
Topic
Presented by: Beatrice Kahenya (MScN, PHC-NP) and Lance Archer, moderated by Amos Tunji-Ajayi (MPH, SCAGO Education Coordinator) during the 2023 Sickle Cell Summit Ontario.
Summary: This 50-minute video is a great recording of psychosocial track 1 of the 2023 Sickle Cell Summit Ontario. Two professionals who live with SCD talk about non- pharmacological management of sickle cell pain.
The first speaker (Beatrice Kahenya) talks about the differences between acute and chronic pain, exploring when non-pharmacological measures fit in and the top 3 non- pharmacological modalities from a literature and clinician perspective. (Starts at 5:04)
The second speaker (Lance Archer) provides the lived experience perspective of using non-pharmacological interventions for managing Sickle Cell pain. (Starts at 24:10)
Non- Pharmacological Management of Sickle Cell Pain offers
Sickle Cell Disease Information for Patients and Caregivers
Sickle Cell Disease Information for Patients and Caregivers
Topic
Provided by: Sickle Cell Awareness Group of Ontario (SCAGO).
Summary: This page on SCAGO website provides a variety of information on Sickle Cell Disease. You will find articles to read or download on different topics including adhering to treatment, blood transfusions, Covid-19, iron overload, and much more.
Sickle Cell Disease Information for Patients and Caregivers offers
Inspirational Stories from Canadians living with Sickle Cell Disease
Inspirational Stories from Canadians living with Sickle Cell Disease
Topic
Provided by: Sickle Cell Awareness Group of Ontario (SCAGO).
Summary: Visit this page on the SCAGO website to understand the intricacies of the overall impact of Sickle Cell Disease, from the perspective of individuals with lived experience and siblings of those affected. These stories are presented as short videos or articles.
Inspirational Stories from Canadians living with Sickle Cell Disease offers
Sickle Cell Disease Association of Canada
Sickle Cell Disease Association of Canada
Topic
Provided by: Sickle Cell Disease Association of Canada
Summary: The Sickle Cell Disease Association of Canada (SCDAC), established in 2012, is committed to raising awareness of sickle cell disease by improving the identification, diagnosis and treatment of this disease, with the goal of improving the quality of life for those affected by it and their families.
To achieve its mission, AAFC/SCDAC supports the development and growth of its member organizations in Canada and facilitates their collaborative efforts. Visit their website to learn more.
Sickle Cell Disease Association of Canada offers
How To Reduce Sickle Cell Crisis & Hospitalizations
How To Reduce Sickle Cell Crisis & Hospitalizations
Topic
Provided by: Sickle Cell Association of Ontario
Summary: The Sickle Cell Association of Ontario hosted an interview with Dr. Marjorie Brewer, a physician and patient engagement advocate who lives with Sickle Cell Disease. Over the 2-hour recording, hear her own story along with her expert advice on reducing crises and hospitalizations with self-care and wellness techniques.
How To Reduce Sickle Cell Crisis & Hospitalizations offers
Mindful Mondays for Sickle Cell Disease
Mindful Mondays for Sickle Cell Disease
Topic
Provided by: Sickle Cell Disease Association of America, Inc.
Summary: Mindful Mondays is a series of short video sessions, designed to introduce and promote the practice of mindfulness and well-being to those living with Sickle Cell Disease, their caregivers and to all, through breathwork, affirmations and mindfulness techniques. Join Dr. Marjorie Brewer and the Sickle Cell Disease Association of America community and enjoy these Mindful Mondays sessions.
Mindful Mondays for Sickle Cell Disease offers
Related resources to Sickle Cell Disease
My SleepWell
My SleepWell
Topic
Sleep
Developed by: Drs. David Gardner and Andrea Murphy from Dalhousie University, Halifax, Nova Scotia, Canada and contributed to by psychologists, psychiatrists, family doctors, pharmacists, people who live with insomnia, researchers, and sleep experts to make sure that our recommendations and content are accurate and practical.
Summary: Sleepwell has two main goals: 1) to help people with insomnia get their sleep back without medications; and 2) to help people stop taking sleeping pills safely and effectively. Sleepwell recommends CBTi (cognitive behavioural therapy for insomnia) because it has excellent evidence that it works. The challenge for many is getting access to CBTi. This is where Sleepwell comes in. The website includes a highly scrutinized short list of recommended CBTi resources to help get you started without delay. Their recommendations take a self-help approach to CBTi rather than requiring that a therapist be involved, which is also a great option but not available to most people.
My SleepWell offers
Articles Tools and Resources
IMPACT Program
IMPACT Program
Topic
PainDeveloped by: A multidisciplinary group of researchers and clinicians along with people with lived experience led by Dr. Brigitte Sabourin and Dr. Renée El-Gabalawy at the University of Manitoba in Winnipeg, Manitoba, and funded by the Health Science Centre (HSC) Foundation.
Summary: The IMPACT program is based on the scientifically proven approach called Acceptance and Commitment Therapy (ACT) for chronic pain. There have been over 100 randomized controlled trials supporting the many benefits of ACT for chronic pain including improved mental health, better quality of life, lower disability related to pain, higher self-efficacy and decreased fear of being active.
By completing the IMPACT program,
- You will explore what your personal values are and what REALLY matters to you;
- You will learn tools that will help you be less controlled by chronic pain and the suffering that often comes with it;
- It will help you commit to living a life based on your own personal values;
- It will help you learn about the role of sleep, communication and relationships, and medications in chronic pain management.
Note: A Power Over Pain Portal account is required to partake in the course.
IMPACT Program offers
Self-directed Courses
Palouse Mindfulness
Palouse Mindfulness
Topic
Mindfulness
This online Mindfulness-Based Stress Reduction (MBSR) course is 100% free, created by a fully certified MBSR instructor, and is based on the program founded by Jon Kabat-Zinn at the University of Massachusetts Medical School. More than 7,000 graduates from 100 countries have completed all the course requirements.