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Living with Sickle Cell Disease
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Sickle cell

Hello everyone my name is Jessica well i didn't know i had sickle cell disease until i Gave birth to my first son. I kept on wondering why my doctors was telling me i was high risk until i had him n they told me he had the trait of it just wondering why nobody trying to help me i have been working for warehouses and Cant anymore becausei get over heated or sometimes it be to cold all i want is help and i can't get it

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Hello Jessie,

Congratulations on the birth of your son.

I find it a little strange that you never knew you had sickle cell disease until after you gave birth to your son. Either your parents were great in making sure you were well cared for and so never experienced crises which is of course next to impossible or you have the trait which symptoms often manifest during cold and pregnancy. I would suggest you do a test to know exactly what you got so that appropriate care and management can be taken.

Wish you all the best.

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Well yea they took very taken care of they had me taking iron meds and made sure i had the right things to eat but just wondering how can i do that. I didn't start having crisis issues until 3years ago but the doctors couldn't tell me what was going on

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My first crisis was 4 years ago at a friends house

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What 2 do cause some doctors say I have it and some say I don't. So What do I need to do.

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Well how i found out i had it was thru my son and he is mix his father can't carry it because of the race he is i went to check myself into a hospital to be sure and they told me i had the full blown disease

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Hi JessieRenee,

Wonder why the doctors would tell you that your sons father couldn't be a carrier just because of his race. Its deeper than that, what's his heritage if he's got some deeper roots in his background that contain, Indian, or other olive or dark skinned races he could be a carrier also. Take care of Yourself dear and Your children. Blessings,

Living Life

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Well his father is 100% white his isn't mixed or nothing i already checked that out then idid my family i went straight to my dad n he told me off gate that it was me

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Hi Jessie,

Maybe, I'm just dumb in my advanced age but. just as both your parents would need to have the trait to in turn have you with SC you and your mate would both need to be carriers or your child would just have 1 trait.

Living Life

Just take good care of yourself, so you can take care of your family

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Both my Parents had the trait which i end up having the disease by both my parents having it my son only got the trait was behind me. If me n his father would have had it it would be different but i wouldn't know which one he Would have

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You should go get blood work done, as soon as possible. This will help you determine exactly what it is.

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Hi Jessie Congratulations on the birth of you son. I once read that there are various degrees of how serious SCD can be. For instance there are some people with SCD who never have crisises maybe because of how they take care of their health, and then you have people who have to have dialysis several times a week because of kidney failure. So I guess you are one of the lucky ones. Now that you know you have SCD, you need to keep warm, keep hydrated and rest. Remember to ask friends and relatives for help when you can’t cope. Get your GP to refer you to a haematologist that can monitor your so you keep well. Good luck. X

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Wish i could go to family and friends most my friends don't understand n most of my family don't understand my first crisis was almost 4years ago at a friends house n they didn't know what to do

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Hi JessieRenee,

Just learn as much as you can then teach family and friends just what your specific needs may be given your situation. Heat, cold, mild, med., or extreme pain be it chest pain, organ pain, head pain and stay hydrated..keep water with you always.

Living Life

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well i do drink alot of water i try n stay in mild weather nt ti cold not to hot

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Congratulations on baby, Jesse. But first you need to get tested with a specialist that deals with blood disorder, also your husband, regardless of him being white. You need to know if you have the disease or the trait.. Both of your parents more than likely has the trait and passed it to you. It doesn't show up in regular blood work up, only when they are looking for something or ruling out something. I was told for years I had the trait but it was ruled out when I was pregnant at 41 and had to take the risk tests. Earlier years measuring blood count was not accurate so people was caught in the middle of not knowing . But it sounds as if you and your husband has the trait and passed it to your son. Myth, they whites can't have trait or disease is dying out fast. They can and they do.

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Well i know for a fact i have the disease did all the test and procedures for that and my son dad isn't my husband and he took test too to make sure and he doesn't have it and both of my parents got the trait. So i didn't get my first crisis till i was 23 and if i had one when i was younger i don't remember that's 4years after i had my son

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As I said before a regular blood test doesn't show up the sickle cell trait or the disease . I'm 67 and was diagnosed at a early age only because my blood count stayed so low. But it was the trait they said I had . I had each child tested when they were born and they were clean. But I had a lot leg pain no one could say why. When I was 41 and pregnant with my last child is when I was retested and found out that I didn't have the trait or the disease. I asked why I was told that . The testing has improve and the measuring counts was off in the time period I was tested. Yes, you can go for years and not know you have something unless they are looking for it. Sometimes it will jump from one generation to another or another family member you not even are aware of. They are learning more about it everyday. It's good that you have found now, so you can aware of illnesses to look out for. This you and your family can do to stay healthy together. I have a cousin who has it and he's marvelous young man. It has always been easy for him but he finished college, teaching at high school. The point is never give up and stay on the drs to give you and your son the best care possible, if you don't no one else will.

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