Need to understand: I'am 52 years old... - Sickle Cell Society

Sickle Cell Society

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Need to understand

friendly2 profile image
10 Replies

I'am 52 years old, and have sickle cell trait. I get so sick of people telling that people with the trait only have 1% of the crisis problems. Mostly no problems related to the trait at all! As a teenager, i had severe stomach pains, and illnesses that lasted longer than they normally should. Not to mention, that it was easy to to catch illnesses, and hard to fight off anything. Medical field claims to be smart that one of my brothers learned only at almost 50 that he even had a trait! So why do they lie and tell us that our trait isn't the cause of joint stiffness, lack of energy, unable to stand for long, and pain daily?

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10 Replies
Bluebells profile image
Bluebells

I agree. I am 64, and have always somewhat sickly as a child . I suffer from arthritis,but no doctor attributes my pains to the trait! My Mom had the trait and was sickly all the time as I remember.

SCSZoe profile image
SCSZoePartnerSickle Cell Society

In short, the trait is poorly understood because it's only very recently that they started doing any research into it. Hopefully future generations will have answers.

in reply toSCSZoe

I knew about sickle cell from my biology class, I'm 35 y/o by the way, yes it affect the red blood cells but it got nothing to do with people that grew up in mosquito effected area ( I grew up in Africa & none of my siblings has sickle cell) but some are carriers, like myself & my brother, we both have the AS genotype while my sister has the AA genotype. sickle cell is well explained using genotypes, AS genotype is a carrier, AA is the alpha type if mixed with a carrier AS, it wont even produce a sickle cell while if both carrier AS mixed, they will produce, One AA, Two AS (carriers) & One SS (sickle cell), so for a sickle cell to be active, parents both had to be a carrier of the sickle cell.

Ps: One of my parent had the AA genotype while the other AS genotype.

They should be awareness for people to know more about genotypes and pray tell a carrier who is not aware of their genotype needs up marrying a Carrier, 100% that they will produce one sickle cell.

cbcrump profile image
cbcrump in reply to

Yea thats understood , but the issue is Dr's are not taking the trait to be serious

NikiA profile image
NikiA

I agree. I had many symptoms as a child/teenager which I now see in my son who has SCD, but none was ever attributed to the trait. I used to have severe constipation, anaemia, low iron, etc. The only thing a doctor ever attributed to SCT were my pregnancy pains. My 3 pregnancies were the worst periods of my life, it felt like I was dying at times. I was severely anaemic, had swollen legs, severe haemorrhoids, severe morning sickness - more like all day sickness, etc.

I have since learned from doing my own reseach SCT predisposes you to certain illnesses - Google it as I don't want to frighten anybody by mentioning them.

More research is definitely needed into the trait.

cbcrump profile image
cbcrump in reply toNikiA

Yes you're right

Leora15Duarte profile image
Leora15Duarte

I find that it's easier for them to give the standard response rather than do the research about our problem..or our type of pain. Which makes one wonder what's really going on? If ur a person like myself who refuses blood they really treat u bad but let's say for argument sake u want all the bells & whistle to treatment ur doctor is not at all concerned about ur situation.. And let's be honest poo poo ur condition down to age related problems if ur older than 25 & if younger poor diet. Truth is yes things could very well be true also but as human beings don't we deserve a deeper look if we know about our medical history? I ask what will it take ,who will justify ur concerns

HK786 profile image
HK786 in reply toLeora15Duarte

I read somewhere that stem cells research is going on for permanent treatment of sickle cells. BUT for the time being bone marrow is the only permanent solution . Another solution is Hydroxy urea but you have to take this medicine daily

cbcrump profile image
cbcrump

That part I'm having to deal with the same issue

clovercupey profile image
clovercupey

My son has sickle cell trait and tires so easily, has frequent indigestion problems and dehydrates during illness incredibly quick, last time he got sick after vomiting a few times almost went into a metabolic acidosis, even after he was already at the hospital getting treatment. the symptoms are real not rare

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