Hemoglobin c trait...SCT..SCA...what do I have

[Diamondlyfe16]

I am 44 I was diagnosed with SCA 3 years ago after several visits to the hospital, several admissions...multiple blood transfusions and a hematologist ...I am now being told that I do not have SCT or SCD or SCA but Hemoglobin C trait and that this causes no problems at all. Funny thing is this I never said anything about SC to the Dr. Who diagnosed me with SCA ....so #1. How could I even be diagnosed if there was no evidence of this in my blood work 2. Why have I always experienced pain in my abdomon, hips, and legs...3. What exactly is hemoglobin C trait ... And if my pain crisis is not attributed to this what else could it possibly be!?!?!?! Severely confused

[jo19]

I am sorry you are getting different results and information. To be honest I am not sure exactly what to say but I am wondering if you are SC instead of SS. I have met a few who don't get ill that much but still get a crises a few times. There are some sicklers with haemoglobin F who don't get ill as much as those who don't have the F haemoglobin. Try and get more information maybe on Google to see if you can get more information. Hope this can help. Good luck.

[SCSZoe Partner Sickle Cell Society]

Jo's reply above is very helpful, and it's definitely a possibility. Haemoglobin C is an unusual haemoglobin, which causes no symptoms if you are a carrier (trait), but causes mild to moderate anaemia if you inherited the gene from both parents. There's a little more about it here: sickle-thal.nwlh.nhs.uk/blo...

Meanwhile, if you inherit one gene for haemoglobin C from one parent, and one gene for sickle cell (haemoglobin S) from the other parent, you will be born with a sickle cell disorder called sickle cell SC: the SC here stands for your genotype, not as an acronym for sickle cell. This link explains a little more about how inheritance works: sickle-thal.nwlh.nhs.uk/blo...

Sickle cell SC is sometimes called the "milder" form of sickle cell disease. People with SC have fewer "crises" and less severe anaemia than sickle cell SS. However, people with SC are more at risk of eye problems, priapism or bone death than those with SS. So it's really important you get the matter cleared up with your doctors, and find out if you have a sickle cell disease or not. If you do have SC, that might explain some of your symptoms. It also means doctors should definitely monitor your eyes and any joint pain!

[bluebug]

I'm really not sure why the Sickle Cell Society constantly insists that those who are heterozygous with altered haemoglobin don't have symptoms e.g. those with trait. Most people who are heterozygous don't have symptoms but most is NOT the same as all.

Here is an example of someone with haemoglobin C trait having an issue jurology.com/article/S0022-...

So in short I would:

1. Do your own research this involves finding out first how haemoglobin works, how disorders are inherited and the current research on haemoglobin C,

2. Then have an in depth conversation with the haematologists who are treating you NOT your family doctor (GP) about your symptoms.

Personally I've found that most GPs know SFA about blood disorders. However specialists not only haematologists but those where blood disorders impact their treatment of people e.g. anaesthetists, paediatricians tend to know more.