FAQ
Frequently asked questions will be answered here. We all can learn from each other. Please send in your questions to sicklecellwarrior@gmail.com.
a community of those living, loving and surviving Sickle Cell Disease
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Tosin's Corner
Checking In…
Hello everyone, It’s been a few months since I posted on here. First of all I need to apologize for the silence. I know that it may have been very frustrating to come here with no new updates. Since October, I’ve faced alot of challenges [continue reading...]
Setting Goals
For those of you who haven't zeroed in on your purpose in life, this is a great exercise when you have the time. Often we have 'mental lists', but an actual physical list gives you something concrete, something that you can check off, and something [continue reading...]
Featured Warrior
Interview with a Medical Doctor with Sickle Cell Disease
Ever wondered if you could be a doctor with sickle cell? Well you can follow that dream. Dr. Y. explains to us how she went through medical school and became a physician. [continue reading...]SC Foundations
SCD Soldier Network
Sickle Cell advocacy and empowerment organization. Join now!
Very Bright Foundation
Hello My Dear Friend,
I am ignorant about a lot of things concerning SC, but I have a friend, a very close friend who has SC. I am open and willing to learn as much as I can.
Here is my question. I thought that a person with SC would not have children with SC. But after reading your article about Love and SC, there was a story about this couple who was married for 17 years and then the husband left his wife while she took care of their 2 children with SC. How does this happen, and how can this be prevented?
Another question. Do you know of anywhere in or around Los Angeles where I can get tested for the trait without insurance and without paying an arm and a leg?
Thank you,
Kaleesha Washington
People with sickle cell can have children with sickle cell if they have a significant other who is a carrier of the disease. It is hereditary.
AA- no trait, no disease
AS- trait/carrier
SS- SC disease
So AA+AS= 25% chance of having an AS carrier child with each pregnancy. All others will be AA
AA+SS=100% chance of having AS carrier children each time
AS+AS=25% chance of having child with the full blown disease, 50% chance of having child that is a carrier, and 25% chance of having a child that is AA. These are the statistics for EACH pregnancy, which means that it resets upon every pregnancy.
Regarding your LA question, I don’t know. But you can contact the SCD foundation in Culver City and they might have some advice for you. Here is their website. http://www.scdfc.org/contact_us/index.htm
Blessings.
I believe I am a great example for this. Before I got married to my beautiful wife of going on 6 years one of the first questions I asked her, since I have SC disease, was did she have sickle cell. She said no and that she had been tested but when she became pregnant 3 years ago we found out that she had the trait. After that I didn’t question my marriage or if I still wanted to have a child I just hoped that the child would not have to suffer as I do. But it’s 3 years later and my daughter is out of the womb and kicking. Although she does have SC disease she loves doing Taekwon-do and reading even though she’s only two. She has been one of the best things that has ever happen to us and if that day ever comes when she may go into crisis. I’ll be there to coach her how to beat this terrible thing and I wouldn’t change anything. You can see her on my facebook.
Thank you so much. One problem. I don’t know what AA/AS/SS mean. Sorry. I am brand new to this.
KW
Kaleesha, if you read from the beginning what I wrote, you will see that I explained what the letters meant. Thank you for wanting to know more. Check out these links where I explain it in detail:
http://sicklecellwarriors.com/2007/08/transmission-of-sickle-cell/
http://sicklecellwarriors.com/2007/06/what-is-sickle-cell/
Are you interested in having contributing article writers? I’m such a fan And I love to contribute
Absolutely! I would love to have more contributing writers. I feel like there is so much to say, and only 1 of me. Please send your formatted and edited article (preferably in Word format) to tosin AT sicklecellwarriors.com. All articles must be related some way to sickle cell.
I’m a parent and teacher. I was wondering do you have any information or articles about sickle cell beta thalasemmia? My daughter has this but I don’t know a whole lot about it. We attend clinics about sickle cell but I would love to meet someone that has this so I can know more information personally.
I have been having frequent pains in my stomach over the last three years and the doctors have done various test and not been able to come up with any conclusions.I can,t say if it,s a sickle cell crisis because I did not use to get them before,any ideas.Thanks
It sounds like a possible issue with either your gall bladder, liver or pancreas. What is the location of the pain in your abdomen? Does it go away and come back or is it constant? Is it affected by eating? You should go see a Gastroenterologist, or GI doctor. They are the ones that deal with abdominal pain, and ask for them to look at your internal organs to figure out if you have a stone or some blockage. Good luck
Thanks for replying so quickly.The pain is just below my sternum and it comes and go,it doesn,t make a difference if I have eaten or not.I have seen one all they have been able to confirm is that I do not have an ulcer.I have more tests scheduled though.
Growing up I had several cousins pass away, now as an adult I realized some were due to sickle cell disease. A close male cousin of mine is SS and I admire his “silent” strength (he hardly talks about it and most people dont even know). I have the trait (AS) and so do many of my extended family members. I didnt find out till right before I got married, my husband always knew he was AA, and I kinda suspected, but never bothered to check. I have cousins who grew up knowing they were AS, and they would always ask every person before going on a date, if they were AS.
I’ve encouraged my siblings to go get tested, so they’ll know, but they are yet to do so.
As a doctor, even having the trait in my family, has allowed me to understand the disease better and better understand fam members with the disease.
I love this website and the stories. God bless you all.
My brother has Sickle cell disease and I want to buy Nicosan for him online, do you know where can I order it from?
Thanks
I am an AS and my proposed is also AS. We love ourselves due to our good understanding and we are facing serious pressure from our families to quit the relationship. Any advice pls? But remember, we loves our self seriously. Thanks
abubakar, i have found myself in a similiar situation and everyone and everything i hav read says no to continuing the relationship, its very hard to understand how the foundation of marriage has been reduced to procreation and not love, its the harsh reality we have to face in life, its either u chose adoption or pre-genetic testing which is very expensive or if your faith in the almighty is unshakeable,then you hope for the best. but remember,no one wants to bring in a child into the world to suffer.think about that.
Hi Abubakar
I never knew I was AS till my first daughter fell sick and was diagnosed with Sickle cell disease. It was devastating as both of us come from extremely large families and no one has the disease but maybe they are carriers. We havent told our family yet. I was torn when we found out even our second child has the disease. They are ok for now the Doc says they have high levels of HBF. We pray it lasts longer . They are beautiful and full of energy, they are beyond my prayers. I asked my husband whether he would still have married me had he known our status, and he told me he would.Remember its a 25% chance of getting Ss
and its all entirely upto God o give. You may get an AA but there are other conditions that exist in this world eg Downs syndrome, deformity etc. Do I divorce my husband coz we both have the trait NO, we support each other , enjoy our children, uplift them to Gods standard and pray that God gives us the grace to sail through this without doubting him or life
I love this site , the warriors look healthy and happy despite all. Would a warrior please tell me in detail how to prevent the yellow eyes, how come some warriors are plump and I have heard people with Ss are skinny. What do they take. Please if anyone is reading this please reply
Thanks and God bless
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January 17, 2012 at 1:23 am
Hi Abubakar
I never knew I was AS till my first daughter fell sick and was diagnosed with Sickle cell disease. It was devastating as both of us come from extremely large families and no one has the disease but maybe they are carriers. We havent told our family yet. I was torn when we found out even our second child has the disease. They are ok for now the Doc says they have high levels of HBF. We pray it lasts longer . They are beautiful and full of energy, they are beyond my prayers. I asked my husband whether he would still have married me had he known our status, and he told me he would.Remember its a 25% chance of getting Ss
and its all entirely upto God o give. You may get an AA but there are other conditions that exist in this world eg Downs syndrome, deformity etc. Do I divorce my husband coz we both have the trait NO, we support each other , enjoy our children, uplift them to Gods standard and pray that God gives us the grace to sail through this without doubting him or life
I love this site , the warriors look healthy and happy despite all. Would a warrior please tell me in detail how to prevent the yellow eyes, how come some warriors are plump and I have heard people with Ss are skinny. What do they take. Please if anyone is reading this please reply
Thanks and God bless
Hi Natasha,
Sickle cell beta thalassemia is not that common. Not much research is done on this . You will find that most of the medical articles are written in Italian. I knew I had sickle cell trait and so I asked my boyfriend at the time if he also had a trait. He said no. It turns out he had beta thalassemia trait which is very silent as sickle cell trait is. So we have 3 boys with the condition- sickle cell beta thalassemia +. They do not have as many crises but have a tendency to become dehydrated easily, they have problems concentrating urine (they pee a lot0, and they cant tolerate extremes of weather…it puts them in a crisis. Most doctors treat them just like sickle cell disease patients. Patients with sickle cell beta thalassemia 0 (not +) have more severe disease and more crises/complications.