1. I definitely feel you on that one. The condition cannot be considered an 'infection' in the traditional sense of the word. I am sure whoever made that comment on FB did not intend to offend, but hopefully after listening to this, she and others will think differently about Sickle Cell and those who carry the gene.

    Hoping all is well with you.

  2. This is such a great video! I'm definitely going to tweet about it. I think you have the perfect attitude. I hope you'll consider submitting it to the WEGO Health blog carnival for March because the theme is Patient Empowerment – and this video embodies being an empowered patient better than almost anything!
    Here is where you can submit an entry: http://community.wegohealth.com/group/healthbloggers/forum/topics/march-blog-carnival-patient

    Keep up the great work – you're doing huge things for the sickle cell community and the online health community in general! ๐Ÿ™‚


    • I know alot of people that don’t mind it. But personally, it’s always had negative connotations for me. To each their own I guess.

  4. I agree with Kamm…we SC patients are always complaining about NOT being recognized enough in the medical community. So what is it? Do you want others to know what we go through or are we hung up on terms. The term Sickler only identifies us by what happens with our blood cells. I would much rather a nurse or Dr., use the term Sickler it reassures me that they at least know what their talking about. I had my 1st crisis at the age of 3 and did’nt get diagnosed until I was 17, so I am happy to be called something that applies to ME. Now PLEASE don’t get me wrong IF you have had negative experiences that happened to follow that term, by all means be offended but please don’t get all up in arms about it. It’s not as though we’re children on the playground and the bully has the entire school chanting “Sickler, Sickler Sickler”
    I already feel like a mutant b/c of the changes that my body is going through as it is…I really don’t need my nurse to be apprehensive about what to call me while they are trying to take care of me. We are all in this together so can we stop blurring the lines about what is actually the help and respect that we are just beginning to receive.

    • @Bridgett—actually, I have been on the playground with children around me chanting “Sickler, Sickler” so I’m sure you understand where my ‘issues’ come from. I’m not blurring the lines, it’s a personal preference. I don’t get all up in arms about it to the nurses and whatnot when I’m in the hospital, because when I’m sick, I really don’t care. But in my daily life, when I’m in church, school or work, it bothers me. Once again, you must have had better experiences than I did growing up–hence your lack of issue with the term. But when it’s a negative thing all your life, you want to toss it in the garbage as soon as you can. You have to understand that not all of us are coming form the same place, and that not all fingers are created equal. That is the beauty of the internet, it connects different people from different walks of life. So it doesn’t bother you…great. But it bothers me, and this is my space to vent..so vent I did.

  5. When I was younger I heard the tag “sickler” a lot, and it often made me feel like people had tagged those with this genetic condition just like they tag people with leprosy. I don’t like the term either. So it’s a good thing to speak your mind/vent about this. Keep being a warrior ๐Ÿ™‚

  6. I actually feel you on THIS!!! Corrected sum1 a few days ago. When people say ” you are a sickler” i say Nope, i’m not, just have the genotype SS… I’m definitely a sickle cell warrior.Sickle cell ain’t a limitation, only a challenge!!!
    Wrote this poem on d battle wiv sickle cell:

    It’s 7.20am, still in bed
    It’s been raining a lot, catching a cold
    Lying under ma duvet, calming my protesting joints
    Protesting i said? Yes, u heard right…
    Fighting this battle for the millionth time,
    It’s me and ma sickle cells.

  7. Speak on It!
    I totally agree with you SCW and Jaycee! I absolutely despise that word and it seems like the only people that use that term in such negative light are Africans (or shd I say Nigerians).

    • @Ayo, welcome to the site! I’m sure you will learn much here. I look forward to interacting with you on the FB page as well!:)

  8. You lost me when you conceeded that you would adorn the title of “bitch” rather than “sickler” as well on a few other points.

  9. Thanks for airing that out darling! Grrr..It pisses me off when someone calls me a “sickler”! Ts not as if we are sick 25/8,we have our lives fully living it and enjoying. Having sickle cell doesnt make us sicklers…

  10. I believe the term ‘sickler’ was coined from the fact that our rbc tends to take that sickle shape a lot of time, which is the underlining peculiarity of this disorder. However the ‘sick’ part of the word happens to have overshadowed this meaning and seems to be the usual reference when people mention it. It sort of carries an underlining message as to your always being sick. I always say I have sickle cell disorder, I’ve never said I’m a sickler. I cringe at being called a ‘sickler’

  11. Dear Warriors,

    Thank you so much for all your suggestions and words of encouragement. So I need some advice. I was recently diagnosed with AVN on my right hip and the pains appear to be getting worse. I live in Lagos Nigeria and the option of doing the THR surgery is quite a scare especially owing to the fact that proper medical care in Nigeria is not “guaranteed”. Please any ideas or comments from someone who’s gone through the surgery?


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