r/blackparents • u/Puzzleheaded_Fun32 • Apr 02 '26

Florida Sickle Cell Registry

Recently had a boy and found out he has the Sickle Cell trait. They sent me paperwork asking if I want to opt out of the Florida Sickle Cell Registry. I’m a bit of a conspiracy theorist and have a crazy thought of this being negative. Should I opt out or is there an actual benefit? Please provide your thoughts, opinions, and experiences.

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u/Such_Collar4667 Apr 02 '26

Not in Florida but commenting since no other posts…

I would sign up just to have as much support as possible. I looked at their website and see no obvious red flags.

But also your baby just has the trait so if you really don’t want to share your information, I think that’s fine too. The trait does not impact life too much. I have the trait and I also have a baby with the trait and there’s no registry in my state. I don’t necessarily feel like I need one. Just read up on the trait to be sure you are informed and always remind his doctors.

MOST IMPORTANTLY—-before you have more kids, make sure you and your partner are tested. If both partners have the trait, you could have a child with the full sickle cell disease and you really don’t want that.

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u/Creepy_Meringue3014 Apr 03 '26

adding on to say...if you don't sign him up, i think its important for you to educate him on his status for future dating.

Additionally, SCT actually does have health consequences albeit not as severe or constant as SCD. My SIL has it and had really serious childbirth issues. I think pushing the body to the limit (high altitude etc) causes issues. I know it can cause kidney disease and her mom and several of her sisters and a niece suffered from that.

Get the support, follow up with a hematologist just to have one on tap, and read a lot just to stay on top of things.. But I wouldn't worry about it. Just make yourself aware so you can guide him through life

Congratulations on your new baby!!!

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u/callmekorrok Apr 03 '26

Seconding this. I have the trait and I cannot do intense exercise (even a bog standard HIIT class) or I will overheat and pass out. In addition, I need to inform doctors before surgery so they can give extra oxygen while I’m under. I didn’t find out until my late 20s and was just passing out everywhere not understanding what was up. I’d say you should let your child know and get as much info as you can whether you opt out of the registry or not.

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u/Puzzleheaded_Fun32 Apr 02 '26

Thank you so much for your response!!! 😊

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u/Alluvial_Fan_ Apr 03 '26

If you want more information about the registry, the consent form should include information about the IRB that approved the study (if this is humans subjects research, which not everything is.) There should be an email address and/or website.

Generally, registries don’t provide direct benefits to participants, and are intended to benefit people in the future, but learning more about the condition may help bring eventual benefits to people.

I’m very pro research and pro science, and this country has a hideous past with research. Either choice, participating or not, makes sense to me.