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Sickle Cell In America: What Is That?

Are you one of the millions of people dealing with sickle cell disease? Whether you are looking to try new treatments, have your sickle cell under control, or are trying to find answers about the condition, we want to hear from you.

To learn more about the challenges of sickle cell disease and to give a voice to those affected, we are conducting our Sickle Cell In America Survey. By taking our survey, you can bring awareness to the realities of life with sickle cell.

What is the survey about?

The survey covers “basics” like diagnosis and treatment experiences but also dives into the nitty-gritty, like the emotional impact and the day-to-day challenges of managing sickle cell disease. We hope to learn about all things sickle cell, including complementary and alternative treatments, diet and nutrition, symptoms, and quality of life.

Why should I take the survey?

Each person who takes the survey contributes to a better understanding of sickle cell awareness and knowledge, and can help others who are living with sickle cell to feel less alone. Sharing your experiences through the survey can reveal the similarities and differences between each person’s journey.

What will the survey ask me?

The survey will ask about diagnosis, symptoms, symptom management, quality of life and relationships, healthcare professional engagement, and treatment awareness and experience. We do not require your name, address, or other personal information.

Please note that you do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return when you are able. You will resume where you left off.

How do we use the Sickle Cell In America Survey data?

Survey responses help us and our partners better understand and serve the sickle cell community. All survey responses are kept confidential, reported only in total (your specific responses will not be reported individually), and will become the property of Health Union, LLC.

What happens after I take the survey?

After the survey closes each year, the Editorial Team at Sickle-Cell.com takes your responses and creates an infographic to share the community's experiences and highlight important findings from the survey.

But that is not all. Throughout the year, we publish articles and videos based on learnings from the survey, like this one about day-to-day life with sickle cell. We hope this survey-driven content contributes to the information available to those affected by sickle cell and helps them connect with those who have walked the same path.

One voice may seem like it won’t make a difference, but each voice can change how others perceive sickle cell, and bring comfort to someone coping with a diagnosis.

Still have questions? Comment below or email us at contact@sickle-cell.com for more information.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Sickle-Cell.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Community Poll

Anonymous Poll: Which of these have you experienced as a result of your disease? (choose all that apply)