Sikcell: People living with Sickle Cell
We still Hope
Should a Sickle Cell Trait Person Marry Someone with Sickle Cell?
There is a hot topic over at the UKGreat Sickle Cell forum on FB. A
gentleman posted this question: My genotype is SS and my fiance is
AS. I love this girl very much because of her character. I intend to
marry her. Should I go on? I need your candid advice.
I have very strong views about this as a sickle cell warrior. I have
seen too many people with sickle cell get relegated to a lonely corner,
dumped, and heartbroken just because of their genetic condition. I know
many good men and women who are still single yet pining for a spouse
even into their 40s and 50s. The fear of sickle cell is a strong thing,
and I have to agree that not every person is up to the challenge of
living and loving someone with sickle cell.
If you read my archives in the Love and Sex section, you will see
that I struggled with my desire to have a soul-mate against my
genetics, suffering many failed relationships and heartbreak in the
interim. I had earlier ascribed to the notion of not wanting to have
kids unless I was 100% certain that they wouldn't get sickle cell. It
had been drummed into me as a child, that I had to look for an AA to
marry...so that my kids would all be AS. But I realized a few years
later, that there is another option. I could marry whoever I felt was
the right man for me, and if our genetics didn't match up, then science
and modern medicine could help the rest of the way.
Because of this, I cannot advise this gentleman to dump his intended. If
he loves her regardless of her having sickle cell...then I feel that he
should go through with his plans. The only tricky part about it is the
decision to have children. They both should decide if children are the
end all be all. Not every couple has children...and yet, they still live
wonderful and fulfilling lives.
If they do want children that bad, then they could adopt, have a
surrogate egg where she carries the pregnancy, do genetic counseling, or
selective in vitro fertilization (which is possible in the US and UK).
In addition, with each natural pregnancy, she has a 25% chance of having
a child with AS. This does not mean that 1 in 3-4 children will be AS
while the others are SS...it means that with each pregnancy, she could
have an AS child. I know a woman who had the same odds, had 3 children,
and they all are AS.
Besides, the point of marriage is not to be a baby incubator, it is to
share your life and love with someone else and have someone at your back
who loves you and treats you well. Not everyone that gets married has
children...and yet they still have very happy and fulfilling lives. We
are living in a modern age, and the world is already overpopulated as it
is. So choosing not to have children is not the end of the world.
Not everything in life is guaranteed. Even people with AS or AA can get
diagnosed with a condition that has the potential to be more complex
than sickle cell. And yet they still get to find love. Diabetes, Cancer,
Heart problems, Hepatitis...it's a long list of medical issues that
humans now face. Healthy people get viruses that kill within
weeks--nothing is guaranteed! Anyone can have anything, so why is sickle
cell the one that is the must shunned and feared? Bah!
In addition, if your parents had known about their phenotype, and chosen
to break up, abort, or not have you, where would you be today? I
consider my life as a blessing, and as the only sickle cell warrior in
my family, I love my parents for having me. I love my life, and do not
consider it a burden.
So many sickle cell patients end up alone and lonely, without someone to
share their life with because we in the community are even stigmatizing
ourselves out of fear. We live our lives in fear of passing sickle cell
to our offspring. Instead of wallowing in myths and fear, do your
research! You can love someone with sickle cell, and to relegate this
woman to a life without her love just because of her genetic
condition----THAT is NONSENSE!
gentleman posted this question: My genotype is SS and my fiance is
AS. I love this girl very much because of her character. I intend to
marry her. Should I go on? I need your candid advice.
I have very strong views about this as a sickle cell warrior. I have
seen too many people with sickle cell get relegated to a lonely corner,
dumped, and heartbroken just because of their genetic condition. I know
many good men and women who are still single yet pining for a spouse
even into their 40s and 50s. The fear of sickle cell is a strong thing,
and I have to agree that not every person is up to the challenge of
living and loving someone with sickle cell.
If you read my archives in the Love and Sex section, you will see
that I struggled with my desire to have a soul-mate against my
genetics, suffering many failed relationships and heartbreak in the
interim. I had earlier ascribed to the notion of not wanting to have
kids unless I was 100% certain that they wouldn't get sickle cell. It
had been drummed into me as a child, that I had to look for an AA to
marry...so that my kids would all be AS. But I realized a few years
later, that there is another option. I could marry whoever I felt was
the right man for me, and if our genetics didn't match up, then science
and modern medicine could help the rest of the way.
Because of this, I cannot advise this gentleman to dump his intended. If
he loves her regardless of her having sickle cell...then I feel that he
should go through with his plans. The only tricky part about it is the
decision to have children. They both should decide if children are the
end all be all. Not every couple has children...and yet, they still live
wonderful and fulfilling lives.
If they do want children that bad, then they could adopt, have a
surrogate egg where she carries the pregnancy, do genetic counseling, or
selective in vitro fertilization (which is possible in the US and UK).
In addition, with each natural pregnancy, she has a 25% chance of having
a child with AS. This does not mean that 1 in 3-4 children will be AS
while the others are SS...it means that with each pregnancy, she could
have an AS child. I know a woman who had the same odds, had 3 children,
and they all are AS.
Besides, the point of marriage is not to be a baby incubator, it is to
share your life and love with someone else and have someone at your back
who loves you and treats you well. Not everyone that gets married has
children...and yet they still have very happy and fulfilling lives. We
are living in a modern age, and the world is already overpopulated as it
is. So choosing not to have children is not the end of the world.
Not everything in life is guaranteed. Even people with AS or AA can get
diagnosed with a condition that has the potential to be more complex
than sickle cell. And yet they still get to find love. Diabetes, Cancer,
Heart problems, Hepatitis...it's a long list of medical issues that
humans now face. Healthy people get viruses that kill within
weeks--nothing is guaranteed! Anyone can have anything, so why is sickle
cell the one that is the must shunned and feared? Bah!
In addition, if your parents had known about their phenotype, and chosen
to break up, abort, or not have you, where would you be today? I
consider my life as a blessing, and as the only sickle cell warrior in
my family, I love my parents for having me. I love my life, and do not
consider it a burden.
So many sickle cell patients end up alone and lonely, without someone to
share their life with because we in the community are even stigmatizing
ourselves out of fear. We live our lives in fear of passing sickle cell
to our offspring. Instead of wallowing in myths and fear, do your
research! You can love someone with sickle cell, and to relegate this
woman to a life without her love just because of her genetic
condition----THAT is NONSENSE!
Comment
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Comment by Austyn Hart-Tinsley on March 28, 2013 at 8:41pm
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I don't think it should matter, I would not shut someone out of my life if they had the trait if I loved them and if we did have kids. The kinds would have the best parents with helping them deal because we had been through and understand what they go through as well. Love and courage with faith and hope concurs all.
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Comment by Chaznee N. Brown on April 14, 2010 at 3:20am
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Wow Nana...
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Comment by Nana007 on April 11, 2010 at 1:52am
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OT but Chaznee I was the only confirmed case of Sickle Cell in my family, however my great grandmother had 16 kids only 11 of them made it past 18. They died as infants or from childhood sickness its thought the disease isn't new to the family just not known about.
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@ Nana - I was the only person in my family with sickle cell until my little brother was born 6 years after me. We are the only two in my entire family, extended and all, that have sickle cell. I am more sick than he is and it's probably due to me getting older and the daily stresses of living alone and providing for myself. I'm currently in the thought process of moving back home for awhile because I've been in and out the hospital pretty much every month since Jan. 2009 and with no more sick time at work I'm beginning to come up short financially which is causing more stress.
@ Jasmyn - Hey girl! I am so happy you are happy. I've thought about it myself what it would be like to have a relationship with someone who also has SS because I do want to have children one day. I too have had many relationships that have failed and all of my friends and those around me truly do not understand my urge to be in a committed relationship meaning true companionship with a significant other. They take me as almost being desperate and it frustrates me to the fullest because they have no clue about where i'm coming from and how I feel. To already have enough medical complications as it is to possibly not even be able to have children. It's a scary thought that I try not to process in detail but to have that desire and hope and never left me.
@ SC Warrior - I don't understand the judgement and hatred myself. It's horrible. I see that Jennifer person didn't respond from the last time I checked last night. I wonder if she even has sickle cell and if she does she's the one that's angry at something or someone. I really did just have to let that one go...
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Comment by Sickle Cell Warrior on April 9, 2010 at 5:59am
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@Chaznee...Yeah, I just saw the thread...that chick Jennifer doesn't get it. Don't sweat it. I am going to post this blog up tonight on FB, I just wanted to get the discussion going first and not color it with my views. I went to the UKGreat forum and posted my views on there, and I got so many people bashing me. I don't understand where this judgment and self hatred comes from. We as a community really need to educate ourselves!
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Comment by Jasmyn Carpenter on April 8, 2010 at 7:20pm
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To be truthfully honest, I think that you should marry whomever makes you happy. Genes should never determine who you should love. I myself have been in plenty relationships that failed, because an individual did not understand what I was going through, nor were they willing to learn about my disease and be supportive.
I have been dating an individual with SS and I myself also have SS. At first I wouldn't give him the time of day, until a very close friend suggested I should. I have never been happier, he is supportive, always there when I need him, and he understands exactly what I'm going through.
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I'm currently single. But I have always made it a point to ask every guy I've dated if they had the trait or not. Some did, others did. Even though I asked the answer was never really important because at that current stage of my children wasn't a thought. Even now children really isn't something I'm thinking about now. I want to have children in my future though. I have always said I don't want to raise a child with sickle cell. However I will never discriminate against a guy just because they have the disease. If the guy I decide to have children with does have the trait or even the disease I plan to discuss our options thoroughly. I would prefer to have my own children over adopting however I am not opposed to it at all.
I often wonder the odds. My dad is a bit of a womanizer and as a result has alot of kids. I'm the 2nd out of 12 kids and the only one with the disease. My dad has the trait and so does all the mothers of his children. Out of 12 kids; 1 has the disease 7 have the trait and the other 4 are AA.
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Can you post your comments about this subject of FB. I think some people need to hear this. I replied to the post on FB and someone actually called me out about it stating the topic was not about me and basically how dare I even have the desire to bring a child into the world know that I have sickle cell. Some folks are really ignorant and do not understand what sickle cell individuals face not just about marriage and children but companionship alone. For me personally I have to fight and fight basically alone. I live alone . Not to say that I am bitter but I am a prime example of what I and other are speaking on.
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