Sickle cell trait but having complicat... - Sickle Cell Society

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Sickle cell trait but having complications?

PrettyNoona
PrettyNoona

I have sickle cell trait. My blood level is always dangerously low. Hb 6 g/dl. I have headaches almost all the time. Especially when I go out at noon, I get headaches and leg pains so most of the time I just stay at home. I frequent get dizzy when I get up and my vision becomes blur for a short time. I get pain in almost every part of my body but they are usually short lasting and for that they are somehow bearable.

Can someone please help me understand....Is it normal to have all these when you're just a carrier? I don't even know what will be of me If I get pregnant one day or If I get into an accident...with this hb level!

13 Replies
Hidden
Hidden

Hello Uniy, I also have the trait and ALL the symptoms you described everyday. I tell my doctors but they never say that my headaches, pain etc. is related to sickle cell trait because they know little to nothing about it. Instead, I've been diagnosed with fibromyalgia, chronic pain, degenerative arthritis etc.

Hang in there until science catches up!

PrettyNoona
PrettyNoona in reply to Hidden

Hope science catches up soon...lol. Thank you.

Elisa0811
Elisa0811 in reply to Hidden

Science has caught up their stem cell transfusion or bone marrow transfusion’s to help those with sickle cell anemia it may not help everybody but as gently as some of the symptoms can be it would be worth looking into the possibility of being a candidate

Symptoms are common, but you should go get your blood test to see if you have something a little further than just a sickle cell trait because you can have sickle cell and I have other components that give you further symptoms without having the disease

I'm always in hospitals seeing doctors But there's no progress, they always tell me there must be something else, they ask me a lot of questions but at the end of the day they can't diagnose anything.

Have you seen a hematologist?

Yeah, for the past 2 month but he is hardly in the hospital and sometimes I miss him when he is there, so we haven't make any progress yet.

Yes, it is normal. Even if it is rare, someone has to be in that small group and I assume you wouldn’t lie about your symptoms, so don’t ever let a doctor tell youIt’s impossible it’s rare only a very few people have symptoms if you’re presenting with symptoms then apparently you’re one of those view and it’s normal for you to have the symptoms you shouldn’t be compared to other people that are completely on related to you anyway if you’re having the symptoms demand that you be treated for the element and if one doctor doesn’t validate your experience just keep going until you find the one that believed you and not what the bloodwork says

Thanks Elisa. I'll keep going.

Forgive all the typos... I tried speech to text

Worry out, I understood just fine.

There is a growing body of research that symptoms with AS are not so rare as they try to say. It’s just that they always dismiss our symptoms bc it’s hard to measure in a lab. But the CDC website acknowledges that trait

Can have pain crisis from something so simple and common and dehydration. You need fluids and pain medicine when you get sick. You need to educate them with love and logic. Look up the literature and show them. First find a primary physician that believes you and will at least give

You pain meds then hydrate as much as you can at home. Have them refer you to as many hemotologists as it takes to find one that knows the truth.

I am praying for you

Thanks Luvnuallways, I appreciate this.

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