Sickle Cell Warriors


 Breaking News
  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

Memory Loss During Sickle Cell Crisis

memoryThere was a curious question raised a few days ago that had many of us nodding our heads in solidarity. Have you ever experienced a memory loss with sickle cell?

I think it is a combination of two things.

The first is this is part of the body’s defense mechanism. The pain is so bad, so intense that your mind has to shut off and block out parts of it. I have had sickle cell pain crisis that are so severe that I’m pretty much not coherent or conversant with anything going on around me.

In addition to your brain protecting you from the horrible pain, there is also the fact that you are getting high doses of IV narcotics which your body is not used to receiving. The IV pain medications work on the pain receptors in the brain, so this contributes to the fugue and forgetful state. My husband has told me that I’ve had myriad conversations with him while sick, and I don’t remember anything. Usually in a crisis, I’m out of it for about the first 1-3 days. When I regain my full senses, it’s usually at the point when the pain has started to decrease.

The memory loss only lasts for a few days (usually stops once you get off the high doses of IV narcotics). My family and friends have had many funny stories to tell me after the fact, and I usually end up laughing over it. It’s nothing to be embarrassed about, it’s just one of the hassles of sickle cell.

However, because you aren’t in your right mind it’s essential to have an advocate at your bedside when you are in this vulnerable state. During this time, you might not remember the consents, conversations, or medical information received. I always ensure that I have either a family member, friend or loved one with me especially during morning and evening rounds, and shift changes.

I know not everyone has the ability to have a family/friend present at your bedside. In this case, I would suggest that you write stuff down as it’s happening, or record as much as you can via video or recorder. Most App stores have an app that will record voice, and you can start it whenever someone enters the room.

My cousin once signed a consent to have his knee aspirated, and it was something that he didn’t need and later led to infection. If you cannot have someone you trust at your bedside, then you have to be extra diligent in your own care.

Stay blessed and be well.


About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles


  1. Rachel
    Rachel January 05, 12:30

    has anyone ever experienced a catatonic state and can associate it with sickle crisis?

    IHATESC January 16, 17:40

    I can’t remember anything once the meds are given. I’m too busy sleeping or scratching! I have a very bad habit of talking then forgetting mid sentence what I was talking about or why I mentioned it. It’s like I check myself before I get a chance to finish the nonsensical ramblings..I always try to have a loved one at my side during hours that the doctor visits, etc. The phone app is a great idea too.

  3. Jose
    Jose January 16, 09:16

    Has anyone ever experienced memory loss or found it difficult to retain information?

Write a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.


Support awareness & education for SCD

WordPress › Error

Error! Donation amount must be a numeric value.