Husband has Sickle Cell gene and didn't tell me

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So he is a carrier with no complications and you are a eugenicist. Got it

Eugenics is an attempt to "improve" the population as a whole often through forced sterilization and other unethical means. An individual willingly choosing not to have children with a certain person for any given reason is not eugenics. Even if it was, an individual's choice would not be anyone else's business.

We all have free will and should have full control over our own reproductive systems. It is dangerous to demonize that and attempt to guilt trip people.

+1

If you want full control over your reproductive systems, then you both need to get tested. No way around. OP is pissed because she knows she should have done that and she didn’t.

Did you even read what you replied to? I’m sure the anti-“eugenics” warriors believe we shouldn’t even have the option to get tested. 🤡

[Anonymous]

Anonymous wrote:

Anonymous wrote:Did he say why he didn't tell you?

OP here - All he has said is that he didn't want to worry me.

Being a sickle cell carrier is nbd. I didn’t know I was one until I was 40 (because my parents forgot to tell me)! It’s just something to be aware of if they go to visit someplace with high altitude.

[Anonymous]

OP if you cared so much about stuff like this you should have gotten recessive gene screening yourself. If you are not a carrier and he is, then your child might be a carrier but won’t get the disease. It’s not great to be a carrier but what’s the alternative, you don’t have kids with your husband?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Not sure what to make of this. It's standard to offer genetic testing for recessive genes as part of preconception counseling. My thought is that, if this were something you were really concerned about, you would have gotten the genetic testing. It's concerning that your husband didn't tell you beforehand. But many people are carriers for genes without knowing it, and so if it were really a problem for you, I would have thought you would have opted for the screening.

Isn't it also the case that sickle cell gene confers some benefits, like resistance to malaria?

If they don't live in or travel to malaria infested areas, then that benefit would not be particularly useful. Sickle cell trait poses more of a risk than a protection to people who live outside of malaria infested areas. This is why the gene was only selected for in people that come from regions where malaria is prevalent.

Malaria is moving toward more temperature regions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Red Cross screens ALL blood for a lot of stuff including Sickle Cell Trait. Some people can't safely receive that blood, most can. Look it up.

Well, they don't screen ALL blood for sickle cell. They make it clear that they only screen blood from black and part black donors for sickle cell.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial." - https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait." - https://www.redcrossblood.org/faq.html

Because it impacts the blood product itself, because they don't have infinite financial resources for testing, and because the carrier rate is astronomically higher in populations with African ancestry. It's a scientifically based decision to get the most bang for their buck, not some racist crusade. I guess it's also sexist that only women are carriers of hemophilia and Duchenne muscular dystrophy?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure what to make of this. It's standard to offer genetic testing for recessive genes as part of preconception counseling. My thought is that, if this were something you were really concerned about, you would have gotten the genetic testing. It's concerning that your husband didn't tell you beforehand. But many people are carriers for genes without knowing it, and so if it were really a problem for you, I would have thought you would have opted for the screening.

Isn't it also the case that sickle cell gene confers some benefits, like resistance to malaria?

If they don't live in or travel to malaria infested areas, then that benefit would not be particularly useful. Sickle cell trait poses more of a risk than a protection to people who live outside of malaria infested areas. This is why the gene was only selected for in people that come from regions where malaria is prevalent.

Malaria is moving toward more temperature regions.

Did you know that parts of Virginia used to have regular yellow fever epidemics?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Shocked by these responses.
This is a serious big deal. Just like it would be to hide infertility. This might not be a big deal for some but is for OP so one should be dismissing her concerns.

No, it’s not even close to hiding infertility. It should have been mentioned to make sure that the partner is not a carrier as well, but being a carrier doesn’t affect quality of life. SCD develops when inherited from both parents.

According to a previous poster, this is incorrect. See quote below.

"It's a widespread myth that sickle cell trait is always asymptomatic. Sickle cell trait is an intermediate phenotype, not a true asymptomatic carrier state. A proportion of individuals with SCT WILL have pain crises and other symptoms. Think of the trait as a less severe version of the disease. OP, I can't decide for you if you're in the right to be angry. I can only provide you with scientific facts."

Thank you for spreading awareness.

My husband and 2 (out of 5) of our daughters have sickle cell trait. My older daughter is symptomatic. She experiences pain crises that are brought on by triggers. It is difficult to get doctors to take us seriously because most do not know it is possible for the trait to cause symptoms (as in our daughter's case). We are also Bangladeshi which leads to more difficulty. We live in the UK and it is the common belief within the NHS that it is only found in people from Black African and Black Caribbean backgrounds. We have had doctors tell us we must be mistaken because sickle cell does not affect South Asians. One was even convinced that we had gotten thalassaemia and sickle cell confused.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Red Cross screens ALL blood for a lot of stuff including Sickle Cell Trait. Some people can't safely receive that blood, most can. Look it up.

Well, they don't screen ALL blood for sickle cell. They make it clear that they only screen blood from black and part black donors for sickle cell.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial." - https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait." - https://www.redcrossblood.org/faq.html

Because it impacts the blood product itself, because they don't have infinite financial resources for testing, and because the carrier rate is astronomically higher in populations with African ancestry. It's a scientifically based decision to get the most bang for their buck, not some racist crusade. I guess it's also sexist that only women are carriers of hemophilia and Duchenne muscular dystrophy?

+1 million. I work in the blood banking industry and the Red Cross is spending significant resources to support the sickle cell community with their intiative. People with this disease need often need multiple transfusions throughout their lives and are hard to match. This testing costs money but they are doing this as part of their mission in furtherance of public health, not because they are discriminatory.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Shocked by these responses.
This is a serious big deal. Just like it would be to hide infertility. This might not be a big deal for some but is for OP so one should be dismissing her concerns.

No, it’s not even close to hiding infertility. It should have been mentioned to make sure that the partner is not a carrier as well, but being a carrier doesn’t affect quality of life. SCD develops when inherited from both parents.

According to a previous poster, this is incorrect. See quote below.

"It's a widespread myth that sickle cell trait is always asymptomatic. Sickle cell trait is an intermediate phenotype, not a true asymptomatic carrier state. A proportion of individuals with SCT WILL have pain crises and other symptoms. Think of the trait as a less severe version of the disease. OP, I can't decide for you if you're in the right to be angry. I can only provide you with scientific facts."

This is true but any signfiicant symptoms are rare. Doesn't mean OP shouldn't be upset, but let's not exagerate the actual impact of sickle cell trait on people's lives.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is he Black? It is common knowledge that Black people must be screened for sickle cell due to it being more common in that demographic. Other racial/ethnic groups have other conditions that must be screened for. When I was pregnant, I had to fill out a form at the OBGYN that asked about both of our ethnic backgrounds so that they would know what they needed to test for.

WTF. Most Black people are not screened for sickle cell.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial. The screening involves a simple blood test.

It is estimated that about 1 in 13 Black or African American babies in the United States is born with the sickle cell trait, according to the Centers for Disease Control and Prevention. However, many individuals are unaware if they carry the trait as testing at birth was not widely provided until 2006."

https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait."

https://www.redcrossblood.org/faq.html

BS policies like this are why I always check the Pacific Islander box as a fully Black woman. As soon as they see that Black/African box checked, they start treating you differently than they would an individual of another race. Apparently you can't even donate blood in peace as a Black person. How is the Red Cross only screening the blood of Black (and part Black) donors for a genetic blood disorder (sickle cell) not considered discrimination???

Truthfully, it would be a waste of time and resources for them to screen every single donor. Only people with at least one (relatively recent) African/Black ancestor are at risk for sickle cell trait and disorder. Scientists have determined sickle cell arose in Africa 7,300 years ago in response to Malaria. To put that timeline into perspective, the current Out of Africa theory (if you believe it) states that the ancestors of non-African populations left Africa between 60,000 and 194,000 years ago (which would be before sickle cell came into existence in Africa). There are different estimates depending on which source you rely on.

I will say the only risk with not screening every donor is that there are people that have hidden African ancestry and could be at risk for sickle cell without knowing it.
https://www.the-independent.com/life-style/health-and-families/health-news/hidden-black-ancestry-linked-to-rise-in-sickle-cell-blood-disorder-738008.html
https://www.science.org/content/article/genetic-study-reveals-surprising-ancestry-many-americans

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure what to make of this. It's standard to offer genetic testing for recessive genes as part of preconception counseling. My thought is that, if this were something you were really concerned about, you would have gotten the genetic testing. It's concerning that your husband didn't tell you beforehand. But many people are carriers for genes without knowing it, and so if it were really a problem for you, I would have thought you would have opted for the screening.

Isn't it also the case that sickle cell gene confers some benefits, like resistance to malaria?

If they don't live in or travel to malaria infested areas, then that benefit would not be particularly useful. Sickle cell trait poses more of a risk than a protection to people who live outside of malaria infested areas. This is why the gene was only selected for in people that come from regions where malaria is prevalent.

Malaria is moving toward more temperature regions.

I’m assuming OP lives in the US (specifically DC), and Malaria isn’t an endemic here. Most of the cases recorded here are from people that traveled to another country where it is common and brought it back with them.

There are conflicting views on whether climate change is likely to cause an increased incidence of Malaria. A lot of factors play into it (like drug resistance, mosquito control programs, living standards, etc.). Either way, OP’s son/daughter isn’t likely to come into contact with Malaria in his/her lifetime if they live in the US and do not travel to high-risk regions. The SCT will pose more of a risk to OP’s child than Malaria if that is the case.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is he Black? It is common knowledge that Black people must be screened for sickle cell due to it being more common in that demographic. Other racial/ethnic groups have other conditions that must be screened for. When I was pregnant, I had to fill out a form at the OBGYN that asked about both of our ethnic backgrounds so that they would know what they needed to test for.

WTF. Most Black people are not screened for sickle cell.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial. The screening involves a simple blood test.

It is estimated that about 1 in 13 Black or African American babies in the United States is born with the sickle cell trait, according to the Centers for Disease Control and Prevention. However, many individuals are unaware if they carry the trait as testing at birth was not widely provided until 2006."

https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait."

https://www.redcrossblood.org/faq.html

BS policies like this are why I always check the Pacific Islander box as a fully Black woman. As soon as they see that Black/African box checked, they start treating you differently than they would an individual of another race. Apparently you can't even donate blood in peace as a Black person. How is the Red Cross only screening the blood of Black (and part Black) donors for a genetic blood disorder (sickle cell) not considered discrimination???

But what happens when you show up to donate and clearly aren’t fully Pacific Islander? Will the Red Cross worker change it to your actual race and test your donation for sickle cell anyway? Just ignore it?

I know black, white, and Asian people that self-identify as another race on forms (mostly job and college applications) because they think it will benefit them in some way. I’ve always wondered what happens when they show up in person and clearly aren’t the race that they put. 🤔

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Shocked by these responses.
This is a serious big deal. Just like it would be to hide infertility. This might not be a big deal for some but is for OP so one should be dismissing her concerns.

No, it’s not even close to hiding infertility. It should have been mentioned to make sure that the partner is not a carrier as well, but being a carrier doesn’t affect quality of life. SCD develops when inherited from both parents.

According to a previous poster, this is incorrect. See quote below.

"It's a widespread myth that sickle cell trait is always asymptomatic. Sickle cell trait is an intermediate phenotype, not a true asymptomatic carrier state. A proportion of individuals with SCT WILL have pain crises and other symptoms. Think of the trait as a less severe version of the disease. OP, I can't decide for you if you're in the right to be angry. I can only provide you with scientific facts."

This is true. Having the trait means that we inherited a normal allele from one of our parents and an abnormal (sickle cell) allele from the other parent. We have both normal (round) and abnormal (sickle-shaped) red blood cells in our bodies. If you look at our blood under a microscope, you will see both shapes of red blood cells present. The abnormally shaped red blood cells that are present can cause health issues for us. The trait is just considered less problematic than the disease because we do have some normal (round) red blood cells. People with sickle cell disease have NO normal red blood cells. All of their red blood cells are sickle shaped.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Shocked by these responses.
This is a serious big deal. Just like it would be to hide infertility. This might not be a big deal for some but is for OP so one should be dismissing her concerns.

No, it’s not even close to hiding infertility. It should have been mentioned to make sure that the partner is not a carrier as well, but being a carrier doesn’t affect quality of life. SCD develops when inherited from both parents.

According to a previous poster, this is incorrect. See quote below.

"It's a widespread myth that sickle cell trait is always asymptomatic. Sickle cell trait is an intermediate phenotype, not a true asymptomatic carrier state. A proportion of individuals with SCT WILL have pain crises and other symptoms. Think of the trait as a less severe version of the disease. OP, I can't decide for you if you're in the right to be angry. I can only provide you with scientific facts."

Thank you for spreading awareness.

My husband and 2 (out of 5) of our daughters have sickle cell trait. My older daughter is symptomatic. She experiences pain crises that are brought on by triggers. It is difficult to get doctors to take us seriously because most do not know it is possible for the trait to cause symptoms (as in our daughter's case). We are also Bangladeshi which leads to more difficulty. We live in the UK and it is the common belief within the NHS that it is only found in people from Black African and Black Caribbean backgrounds. We have had doctors tell us we must be mistaken because sickle cell does not affect South Asians. One was even convinced that we had gotten thalassaemia and sickle cell confused.

I’m so sorry to hear this. Unfortunately, it is common for the symptoms and complications of sickle cell trait to be downplayed or denied altogether (even here in the US). Often no action will be taken by medical professionals until a medical emergency (such as exertional rhabdomyolysis, exertional sickling) occurs. Continue to advocate for your daughters and seek out experts!

[Anonymous]

After reading through this, I’m definitely sensing a racist undertone to a lot of these comments. The dog whistles are strong.