Wednesday, October 9, 2013

Can Sickle Cell Disease be Managed abroad?

It's almost 9pm and i just finished typing up a discharge summary for a patient. Since i have the day off tomorrow, i decided to blog hop before i start writing another discharge summary for a pt who might be leaving tomorrow (even though i'm off o!!!!). Anyway, i saw this post and got an instant headache. Instant and i'm not exaggerating. To be honest, i didn't even bother reading the details of the post. First and only comment i read just prompted me to abort that mission so as not to worsen my headache.

"The US is not like our backward Nigeria my dear. Everything works in that system. They research and make discoveries like no man's business. Managing Sickle cell shouldn't be a problem there at all. Their healthcare system is superb!!!"
This is the most ignorant statement i have ever read in my life


No seriously, really?! So is "abroad" or US supposed to be this magical perfect place? People in Nigeria who think like that need to disabuse themselves of that notion. I'm irritated by it because the patient i JUST finished typing up the discharge summary has sickle cell disease. I just want to cry just thinking about it. Nobody should have to live like that all because their selfish parents decided to take a chance. My play cousin had sickle cell and passed away in 2007. If she wasn't in America, she would without a doubt have died at least 10 years earlier than she did but did that take her suffering away? NO!

If my patient wasn't in America and lived in Nigeria, I have no doubt in my mind that said pt would be dead. This is the first sickle cell patient i have managed and i was horrified (for lack of a better word). I remember my cousin always being in the hospital most of the time but i was a little kid and she left Nigeria a long time before we did. So even though i knew her's was bad, i can't say i have a first hand experience of it, except a few times my mom had to take her to the hospital writhing in pain.

Looking at this patient's hospital records, they have been admitted to the hospital every month this year, sometimes multiple times. Their sickle cell disease is managed by exchange tranfusion, iron overloaded as a result of that, on ridiculous amount of pain medications,multiple pain medication for that matter, avascular necrosis of shoulder, just yesterday, started complaining of hip pain, that i can bet is AVN of hip. Then of course functional asplenia, which can make them susceptible to bacterial infection. Sickle cell disease makes you hypercoagulable, so think of everything else that comes with that. It affects every system of the body, kidneys, lungs, joints, everything. It's not a freaking joke!

I walk into the room some mornings and this pt can't even talk to me because of the pain, forget about touching them to do an exam. They can't even bear the light touch of a stethoscope. I just feel so bad thinking about it. This is after 6 days of being in the hospital. I don't think it's fair that anyone should have to live like that especially for something that is so preventable. Back in the day, people didn't know. Now we know, why take that chance and sentence someone to a life of pain? It's not fair and it's such a selfish thing to do.
I don't think i had a clue about this disease until i managed this patient. I was clueless.This patient has to show up at the sickle cell clinic weekly and be closely followed. I kept asking my senior resident and attending...Is this a typical sickle cell patient? I wanted to believe that he was worse than normal because what i was seeing couldn't be what the average sickle cell patient went through. That's what i wanted to believe. But they all said, yeah! It's typical. What about my close friend who only has like 2 crisis a year? He probably doesn't have HbSS, might have HbSC or a higher percentage of normal RBC to sickled RBC. Hmmm....

I didn't really read the details of that post (although the gist of it seems to be taking a chance and going abroad to treat if he has a child with sickle cell) or subsequent comments, but i just felt the need to talk about this because it's something i have been affected by for the last week and to see someone make such an ignorant comment, i couldn't let that go, like i go a lot of the nonsense medical questions and advice i see on that blog.

Are the Sickle cell patients in America better managed than the ones in Nigeria? 100,000 million times, yes!!!! BUT that doesn't not take the suffering away or make it okay. It doesn't! No one should ever have to live like that especially if it's preventable. Our parents and grandparents had the excuse of ignorance. We don't have that excuse.

With that being said, two of my very close friends who are both AS, within the last couple of years have married AS partners. The first gave birth in Feb and the other one in Sept. They both did CVS. Of course, that means that abortion was an option for them. I'm just throwing it out there to let people know that they have options. The only other option i know to have a biological child if you are against abortion and don't want to take the chance you would have to have one is to do IVF and they can check the genotype before implantation, otherwise, you can marry and adopt a child or remain childless. It's not written anywhere that only people who want to have children should marry or every married couple should have a child.

*CVS is done in Nigeria too. Second couple did theirs in Nigeria. There might be other options. This is not my areas of expertise. Educate yourselves. 

*America is not a magic place where everything is kisses and rainbows.
*I would also like to point out to anyone who thinks otherwise that there are A LOT of sickle cell kids in America. I am shocked at the amount of black people who do not know their genotype. All those baby mama/baby daddy things do you think they sit down to talk about genotypes? (Forgive me for this but it's the truth).

Better stop that rough play and rid yourself of ignorance. It's not cute. 

Good night.

*I understand proper grammar rules but i did not want to reveal the gender of said patient, so forgive the use of they instead of he/she. I have no desire to violate HIPAA. That is the main reason why i don't talk about my experiences with patients. Too much of a hassle.


  1. Such an enlightening post. Thank you!

  2. God will everly bless you for this post. I was just talking about this to someone and she said I didn't understand the power of love and that as long as the couple love each other, they can overcome all the pain. I explained the constant pain the SS/SC patient goes through and she thought her argument still hinged on the power of love.
    After seeing my own younger brother go through this (my parents didn't know at the time), I cant ask my enemy to go through that risk but to each mumu his own. All I know is that there is NO love worth that risk.

    1. What nonsense is that one talking about? The couple won't even know half the pain. The poor kid will feel the brunt so they better park well

    2. The parents can be loving each other, but what of the pain for the SS child?

      I read that post and did not leave a comment because others already chipped in great responses apart from that first person. Bottom line is research and if you have to go ahead, know your options.

  3. *huge sigh. Just reminds of my 2 kids I know oh, 9,10.their parents didnt know till 3 years ago, they were always sick, but didnt occur to anybody to check. Apparently they did in naija before gettin married, but I guess they got a wrong result. The day I saw this kids sick, I went home and cried. I would say really, I think the medical field here sometimes forget about how to deal with these patients. I had a case once where th patient had to be transfused autologous blood because he had previous transfusion complications. I had to he the one to tell the nurses , do this and do that so the red cells you are transfusing dont get sickled atleast.
    I also know a case of someone. Who married because she found out at a young age she couldnt have kids, so she she married a guy (AS)with kids.well guess what. She had kids, SS kids.

  4. Your piece is very insightful....I am AS myself and eventhough I had an idea of the implications of having an SS child, I always thought it could be 'managed'. I wish a lot more people would read this

  5. You are so right. When i was in year 1 and 2 of medical school. I seriously thought sickle cell was easy to manage. Just take the hydrourea and some antibiotics and you will be fine. Fast forward to third and fourth year and my views changed when i saw the patients clinically. I cannot do it to any child. I advocate knowing yours and your partners blood type and if there's a chance of a ss baby just end the relationship . The CVS route is too late in my opinion because I would not personally advocate abortion . Whether America or Nigeria that disease is painful to everyone. The patient, family , the doctors etc

  6. Couldnt help a snicker at that last bit...better stop rough play and rid yourself of ignorance. Lol. Education noted, as admittedly i don't know much about this terrain.

  7. I remember one i had. She was jaundiced, hemolysing heavily, severely anemic, needed transfusions but wouldn't even let you touch her because of the pain. She could barely move, getting out of bed was torture, she was on admission for weeks at a time.....
    But i have 2 of my cousins who thankfully don't have crises that often because their mother has taken it upon herself to educate herself as much as possible about their condition and do all that she can to minimise their crises. But even at that the pain episodes are inevitable. So so heart breaking.
    I wish people would educate themselves better, get tested weigh their options and not inflict such pain on innocent little children.


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