Reply to Husband has Sickle Cell gene and didn't tell me

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]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. 
[/quote]

No, it’s not even close to hiding infertility. [b]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.[/b] SCD develops when inherited from both parents.[/quote]
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."[/quote]
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.[/quote]

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![/quote]

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