Symptoms and the trait

Hi everyone. We're seeing a lot of posts about symptoms and sickle cell trait at the moment, which is food for thought, and we might in future produce information resources about this, because there isn't a lot out there. A quick overview on what's known:

-Sickle cell trait means you carry one copy of the sickle cell gene (HbS) and one copy of the normal haemoglobin gene (HbA).

-If you have the trait, it means your body produces a very small amount of sickle haemoglobin, which means that under certain circumstances, your red blood cells can sickle.

-Because most of the haemoglobin in your body is normal, the majority of people with the trait don't have any symptoms at all, and might not even think to get themselves tested.

-Everyone SHOULD get tested because if you're a carrier (have the trait), your children could have sickle cell disease if the other parent is also a carrier.

-Being tested is also important if you're having surgery: there's a slightly higher rate of complications during surgery if you have the trait. However, if your anaesthetist knows, they can make sure you have extra oxygen, which reduces the changes of complications.

-Why oxygen? Lack of oxygen is one of the known causes of complications in people with sickle cell trait. So be careful if you're at a high altitude (e.g. at the top of a mountain, long-haul flights).

-Other known triggers are high atmospheric pressure environments (such as scuba diving) and dehydration... so make sure you drink lots of water if you have the trait!

-Exercise is also a trigger. If you exercise, let your coach know you have the trait, and STAY HYDRATED!

-Complications can include pain, ruptured spleen, kidney damage.

-There is a slight risk of a rare type of kidney cancer called renal medullary carcinoma which mostly affects people with trait, but it is VERY RARE.

-There are variants of trait called haemoglobin S Antilles and haemoglobin S Oman. These show up on screening tests as sickle cell trait, but can produce symptoms similar to sickle cell disease under normal oxygen conditions. If you are experiencing severe symptoms with sickle cell trait such as frequent pain crises without flying a lot or climbing mountains or getting dehydrated, ask to be tested for haemoglobin S Antilles and haemoglobin S Oman: they need a further lab test.

-However, like I said, more research is needed!

-All that said, lots of people with trait can and do lead normal lives, and can even excel. For example, American footballer Tevin Coleman recently played a brilliant game up in Denver! People with trait are often told they can't do sport, and they can't be at altitude, but that's not true... you just need to take a little extra care. Tevin Coleman drank lots of water throughout the game, and there was oxygen available for him to breath.

We have a new poll, to see how many of you people with trait experience symptoms, please participate!

2 Replies

  • It's also worth saying that because sickle cell trait complications are reasonably rare and often only happen due to particular triggers that if you have trait and experience health problems, these might not be caused by the trait! If you're experiencing, for example, daily pain, get checked for other conditions that cause pain, too.

  • I am glad you are working towards separating fact from fiction on the topic of sickle cell trait. However, I must request your source for the statement that SCT patients have a "small percentage" of sickle cell hemoglobin. I also request specifics on how the percentage is calculated. I am more accustomed to hearing about test results state the percentage of each type of hemoglobin. I routinely test around 42% sickle cell hemoglobin. Any random blook smean shows sickled cells. I have been tested for all known hemoglobin variants as of six years ago and thalassemias. I am AS - strictly a sickle cell trait patient having had infrequent but beyond excruciating pain crisises every few years. Therefore, you may understand why I find it hard to believe that trait patients have only a small amount of sickle hemoglobin. Take care! I wish you well!

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