Information: Hi, I was informed quite... - Sickle Cell Society

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sade4567tui profile image
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Hi,

I was informed quite awhile ago that I have sickle cell trait. I was unconcerned because I was told that there are no symptoms. However, I signed up because I read through many posts on issues other with the trait have been experiencing and I seem to fit the bill for many of them such as joint pain, migraines ( which I've never had before ) and sharp chest pains. I also have abdominal pains quite often but I was recently informed that I have muscle tightness. I don't believe it's related to the trait but I know nothing about it so I would like to learn as much as possible. Any information would be well appreciated.

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sade4567tui
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bluebug profile image
bluebug

Not sure what country you are in but if you are in the UK, ask your GP to test your vitamin D and iron levels to rule out any problems with them.

It is common now in the UK for people especially those who work in offices and are ill so are housebound to have issues with their vitamin D levels. I suggest you say this to your GP if this is true about you, use the term "housebound" in your sentence and stress the joint pain.

From you name you sound female and it's common for women to have issues with iron levels this can give you joint pain and headaches.

Make after sure 7 days after the test you go to the practice and ask for a copy of your test results with the ranges. If you are asked why you want them simply say it is for your own records and you know under the Data Protection Act 1998 you have a legal right to a copy.

Regardless of that you need to ensure you don't get dehydrated. So make sure you have a bottle of water with you at all times. If you exercise then make sure you drink properly during the day before and after. (Dehydration can cause headaches.)

Then ensure you don't get too cold or too hot. Plus you need to control your stress levels.

All these will help to minimise the risk of you having crisis.

Also be aware that you can't go scuba diving or mountaineering due to low oxygen pressure. Though other things are possible.

Finally you need to do some reading. I can't give you any good references as lots of the medical information states that those with trait don't have symptoms unless they do heavy exercise. This is because most medical research in English is done in the West and few people in the West with European backgrounds have trait. However people from the Mediterranean, India, Latin America as well as other regions in the world that have mosquitoes can have it so you are stuck finding medical papers which do studies on small groups of people from areas where mosquitoes are prevalent. If you can read medical papers you will find by Googling that there are variations of sickle cell trait which means you have symptoms of the full blown disease when you aren't dehydrated, at low oxygen pressure, high altitudes or doing heavy exercise. If your symptoms get too bad ask to be referred to a haematologist to find the variant you have but you may have difficulties with your GP in getting this.

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