Sickle Cell Society

Not crazy!!

Hi there..I'm a 40 yr old female and had my 1st crisis at fifteen what we were told was I might have meningitis Not! Crisis number 2#after the birth of my daughter couldn't walk a cab driver had to pick me up off the street & bring me to my mother home bc I was in so much pain all I could say was her address for help.. 3#crisis after my son was born hospital stay two wks blood transfusion had. I am now a Jehovah witness and no longer will except blood. My last crisis whole body shut down hard to breathe couldn't even make tears Kentucky hospital refuse to help me bc I was believed to be a drug addict looking for a fix ,when I did get treatment I was treated like a criminal if I asked for pain meds..All in all if we don't get some new test done and soon someone will die all bc we Only have the trait Not the disease! Ps my daughter now suffers from the same crisis pain she met with a specialist who said no u can't have that you're only a carrier ๏_๏

3 Replies

Well, I have a doctor's appointment next month to see what our next steps are. But they act like they don't care and that I'm after drugs. I'm upset and mad that I don't know what to do. I really need help bad. I can't even get disability. I haven't worked since 2011. Homeless also.


It's been normal for years for sickle cell suffers to be treated like they are drug addicts. In the UK advice from doctors with knowledge is to choose to live in an area with a hospital with a specialist sickle cell unit and only go to that hospital if you have a crisis.

If the specialist says you can't have sickle cell crisis and carriers definitely can, then you need to tell the doctor then find out what is exactly wrong with her and ask the doctor did they become a doctor to leave a child in pain.

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Dear Leora: I have heard this again and again: "no, you can not be having these symptoms because you only have the trait". And you are right, SCT people die of crises. I am so sorry you hare going through all of these difficulties.


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