RESOURCES
for Living With Rare Disease
Living with a rare disease can feel isolating and overwhelming. However, the Pfizer Patient Affairs Liaison (PAL) team has put together a variety of resources that can be accessed anytime for more information.
Sickle Cell
Sickle cell is a red blood cell disorder that is passed down through genetics. Healthy red blood cells are smooth, round, and bendable so they can easily flow through blood vessels and carry oxygen to every part of the body.
Sickle cell begins with hemoglobin, the part of the red blood cell that carries oxygen. People with sickle cell have an abnormal type of hemoglobin that does not carry oxygen as well. After sickle hemoglobin releases oxygen, it clumps together, forming a stiff rod. This causes the red blood cells to become sickled, or banana-shaped. Sickled red blood cells are stiff and sticky, and don’t move freely throughout the blood vessels. Sickled red blood cells can pile up and block blood flow like a traffic jam, keeping healthy red blood cells carrying oxygen from getting where they need to go. This may prevent organs from getting the oxygen they need.
Sickled red blood cells are also very fragile, causing them to break down more easily. When they break apart, things are released from the red blood cell, including a substance called bilirubin. Too much bilirubin can cause the eyes and skin to turn yellow. Because sickled red blood cells break down, there are fewer and fewer in the body to carry oxygen. When there are too few red blood cells carrying oxygen, anemia can result, which may cause people to feel weak and tired.
Resources
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Sickle Cell Speaks:
sicklecellspeaks.com
Sickle Cell Speaks gives people with sickle cell and their families resources and information on life with sickle cell. -
My Dreams Will Not Be Stopped By Sickle Cell:
Download now
Read about some of the misconceptions about sickle cell. -
Pain Can Be Loud, Damage Can Be Silent:
Download now
Use this to track your numbers and ask yourself questions that may help guide your care. -
Learn About Sickle Cell Disease:
Download now
Download to get an overview of sickle cell.
Spanish language resources
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El Dolor Puede Gritar Fuerte, El Daño Puede Ser Silencioso
Descargar ahora
Patient Advocacy Groups
By clicking these links, you will be redirected to websites that are neither owned nor controlled by Pfizer. Pfizer is not responsible for the content or services or these sites.
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Sickle Cell Disease Association of America
sicklecelldisease.org -
Global Genes
globalgenes.org -
National Organization for Rare Disorders
rarediseases.org -
Caregiver Action Network
rarecaregivers.org
If you are living with sickle cell or are the friend or loved one of someone who is living with sickle cell, you may want to connect with more support. Use this locator tool to search for community-based and national organizations that may have resources available in your area.
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DISCLAIMER: Pfizer is providing this information as a resource to you and does not endorse the services provided by these organizations.
Organizations
Patient Affairs Liaison Digital Brochure
An overview of the PAL program. Share this with someone in your life who may want to connect with a PAL!
Insurance Review Webinar Video
This 4-part series provides an overview of health insurance basics. It may be useful to help you understand the options and learn about coverage.
MyHealthcareFinances
MyHealthcareFinances is a tool to help you better understand your finances related to health care and steps you may take to lower your costs.
MyHealthcareFinances está disponible en español: MyHealthcareFinancesEnEspanol
Stay Connected
If you are interested in speaking with a Patient Affairs Liaison (PAL), click or tap below.