Mental health includes emotional, psychological and social well-being.
Your mental and physical health are deeply connected. Mental health is important for your health and quality of life.
As a person living with sickle cell disease, you and your support systems make choices about your physical health, while thinking about the impact on your mental health and psychological well-being.
These are some questions and actions you may want to take as you think about receiving gene therapy.
There are many unknowns about what to expect from gene therapy. Your thoughts, feelings, beliefs and attitudes can have a strong impact on your physical health. Because of this, it’s important to care for your mental and physical health as you consider a gene therapy clinical trial. 
Discuss and assess your mental health with a mental health professional (like a psychologist, counselor or social worker), support system and/or trusted friend.
Write about how you feel about your disease and how it affects your life.
Reflect on why you might want to join this clinical trial. Discuss it with your healthcare provider(s) and your support system.
Your support system will play an important role throughout the process. Let them know about the possible risks and complications of the procedures in the trial.
Here are some questions that you might ask them:
A support system can be a group of people. One person may not have to provide all the help you may need. If you can put together a team to make up your support system, they can share the tasks.
Risks of gene therapy
Check out the sickle cell disease gene therapy FAQ
Cost
Hospital stay
Work–life factors
Manage expectations
How will you feel:
You will experience many emotions as you go through this process. Do not be afraid to find help.
Choose someone in your life you can talk to about how you are feeling without fear of judgement.
If the gene therapy works, you may have survivor’s guilt. This means that you could feel guilty about no longer living with some of the symptoms of sickle cell disease while others still do. You may also feel guilty about being able to participate in a clinical trial when others cannot.
 
You may need to continue seeking medical care throughout your life for the effects of living with sickle cell disease. This may be because of previous impacts of the disease on your body.
You may still experience some symptoms of sickle cell disease.
Keep caring for your general health. You should keep seeking general health care after treatment.
You will need long-term follow-up appointments as part of the clinical trial.
If the gene therapy worked, you may have feel a loss of identity and community from no longer living with sickle cell disease.
It is important to continue seeking social and mental health support if you feel this struggle.
The Democratizing Education Project welcomes your feedback about the sickle cell disease gene therapy resources. Please email your comments or questions to DemocratizingEd@mail.nih.gov.
These educational materials are for informational purposes only. They are meant to promote your general understanding of gene therapy for sickle cell disease. We encourage you to use these educational materials to talk with your healthcare provider or a clinical trial team.
Last updated: September 27, 2024
