Skip to main content

Patient Stories

A family photo of a patient

Hear from those with lived experience of sickle cell disease:

People with sickle cell disease talk about the many ways their symptoms affect their day-to-day life.

“Sickle cell is a thief. It robs you of your strength, your energy, your time. Don't make plans, it robs your plans, your hopes. It creates misperceptions about the person you really are versus who you want to be.”
“No matter what type of preventative measures I take, it seems like this disease says, 'I'm going to do what I'm going to do.'”
“Sometimes my pain was so bad I couldn't even hold a fork. I couldn't even feed myself. So, as you're going through these crises, you just try to manage it and try not to be down.”
person looking worried

You can learn more about the mental and physical effects of sickle cell disease:

People with sickle cell disease talk about facing challenges when seeking care, including skepticism and racism.

“[The doctors] told me there was nothing they could do for me.”
“I literally sat there, clicked the button, called for the nurse..."Hey, I'm in extreme pain. Can I please get some pain meds?' I literally hit that button from three in the morning till eight in the morning. No one came. No one to administer the medicine. No one came to check my vitals. No one came to give me any water.”
Two people holding hands

People with sickle cell disease have tried a range of self-care techniques to manage their symptoms.

“Before I even get to the process of trying to take my opioids, I always look to use alternative treatments like CBD.”
“Heat. Heat saves my life. Heat. Give me all the heating pads. Get heat.”
“Massages are a regular preventative measure that I take. And I don't care how broke I am, I'm booking a massage at least once a month.”
person drinking a beverage

You can learn about these self-care approaches and more for sickle cell disease:

When seeking clinical care for your symptoms, health care providers have a few recommendations:

  • Practice relaxation techniques before you go into a crisis so that you’re prepared when it comes.
  • Ask your doctor for stool softeners, and an incentive spirometer when you are hospitalized for a pain crisis.
  • Working with a counselor and talk therapy can help you learn to control stress, which reduces pain.

You can learn more about talking to your doctor about sickle cell disease

Back to top