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Your mental health and gene therapy

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.

If you are considering 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. 

Focus on your thoughts and feelings. 

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.

man at laptop thinking

gene therapy patient consultation

Reflect on what kind of support system you will need.

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:
 

  • How much mental, emotional, social and spiritual support will you provide me on this journey?
     
  • How much can you support me with my healthcare activities (such as taking medicines and getting to appointments), everyday activities and/or finances? 
     

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.

Consider these other factors.

Risks of gene therapy

Check out the sickle cell disease gene therapy FAQ

Cost

  • What costs does the clinical trial cover?
  • What costs are you responsible for paying?
  • What costs will your support system be responsible for paying?

Hospital stay

  • You may be hospitalized in a different city for an extended time.

Work–life factors

  • You will need to take time away from your job and other daily responsibilities.

Manage expectations

  • How will you feel if you are not eligible to receive gene therapy?
  • How will you feel if the gene therapy procedure does not work?

If you decide to receive gene therapy

family thinking

 

Think about your support system and your mental health.

  • What kind of support will you need from others as you go through this process?
     
  • How will you take care of your thoughts, feelings, beliefs and attitudes through this process?
     
  • How do you care for your thoughts and feelings now?
       
  • Are there other ways to help you mentally prepare for the unique challenges of participating in a gene therapy clinical trial?
     
  • If possible, discuss your feelings with a mental health professional.

 

Think about how you will manage your emotions in the face of these challenges.

How will you feel: 

  • About complications or risks from the procedure?
     
  • If the treatment does not work?
     
  • About staying in the hospital long-term and possibly in a different city to be near your healthcare providers?
     

Focus on caring for your emotions. 

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. 

Woman looking out a window

If you have already received gene therapy

Patient consultation

It is normal to have strong feelings after your procedure. 

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.
 

You may struggle with your social identity.

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.

a family with a young girl high-fiving her doctor

Sickle cell disease gene therapy education project

The Democratizing Education for Sickle Cell Disease Gene Therapy project developed patient-focused educational materials for the sickle cell community.

Understanding the blood cell

Learn about the different types of hemoglobin.

Doctor and patient

Understanding gene therapy approaches

A variety of approaches target the blood stem cells to relieve or reduce your symptoms of sickle cell disease.

Doctor and patient consultation

Navigating sickle cell disease gene therapy

Gene therapy for sickle cell disease is available to you through FDA-approved therapies and through clinical trials.

A couple in discussion

Sickle cell disease gene therapy FAQ

Discuss these questions with your doctor or health care provider.

family with a young girl reviewing forms with a healthcare worker

Patient resources for sickle cell disease gene therapy

Sickle cell disease resources for patients

a group of four healthcare workers seated at a table having a conversation

Resources for healthcare providers

Sickle cell disease resources for healthcare providers

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