Frustrated: For a good part of my life I... - Sickle Cell Society

Sickle Cell Society

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Frustrated

Breeze1 profile image
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For a good part of my life I was told to stop being lazy your OK nothing is wrong with you etc. I was diagnosed with SCT at 13. The Dr told my mom that I'll be fine I won't have symptoms but will experience discomfort in high altitudes. As life moved on the older I became the more I suffered from lack of energy chronic pain all over my body. I stumbled upon this site last year just trying to figure out if you can experience painful episodes with SCT. And this site has been very helpful just wish medical professionals can be more open minded and understand ed its ok to reeducate yourself from old beliefs. I experience symptoms low iron and nerve pain and anemia as well. And I dread the winter time in Wisconsin that seems to be when it kicks in the most.

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Breeze1 profile image
Breeze1
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bluebug profile image
bluebug

What have they done about the low iron?

There are many measures of iron but the common ones are haemoglobin level, sometimes called average haemoglobin level, and ferritin level. If you have sickle cell trait you can easily manage to stay on the lower range border line of haemoglobin level but sometimes dipping under but you should always have a mid-range ferritin level. (Ferritin is a protein which stores iron and is commonly referred to your body iron stores. )

Low iron is known to cause nerve pain which is why I'm wondering why they haven't tried to treat it.

It doesn't mean you won't have pain crisis but if your nutrient levels are optimal it will help your body recover from them better.

321Peace21 profile image
321Peace21

Hang in there, God bless i also was told i wouldn't have problems with the trait. But i have faced many different symptoms from having sickle trait. I agree that doctors should educate them selves more on new problems that occur with sickle cell trait. I know with altitude changes trait symptoms can change so drink plenty of water. Take care

onwa70 profile image
onwa70

drink warm water plenty of warm water on a daily basis.

2.your daily dose of folic acid and vitamins shouldn't be missed

3.Please try not to worry too much.overthinking can lead to an episode.

4.Get warm clothes for winter.

take good care of yourself

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