Tito Oye
Forum Replies Created
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Hi @tracy, thanks for sharing this topic. This isn’t something that I have experienced myself so I am hoping that someone else from the forums sees this and is able to share their perspective.
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Yep @virus, the cold is a big obstacle for people with sickle cell, we need to do all we can to minimise our exposure to it!
I agree, a lot of people are going to find it harder to keep their houses warm this winter due to how expensive our bills are becoming, I’m also praying that they get the help they need!
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I have red blood cell exchange transfusions every 6 weeks that have helped me effectively manage my health.
Since starting them in 2019, I have had to adjust the frequency at which I receive them to make sure that I am as health as possible during the periods between my transfusions.
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I have spoken to someone who shared that they find it hard to prioritise. They want to do all they can to help the person they are caring for, however, this has caused them to neglect their own personal needs at times.
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The changes I have had to make are mainly heat related. Not really structural changes but changes that make sure my environment is as warm as possible.
For example, in my house, we have a very thick, good-quality carpet that helps keep heat in the bedrooms.
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Hi @maryjawad, I hope you and your son are doing well.
This is a medication that I used for 14 years and it worked very well for me, as long as I used it consistently. However, everybody is different and reacts to the medication differently.
It might be worth trialling the medication for a short period and see if you notice any changes.
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@viviane141 @enorris we’re having that same issue here in the UK. So many people with sickle cell would be better off if they had the transfusions, however, if there aren’t enough people giving blood, the treatment isn’t offered frequently. Hopefully things start to change.
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@ace123 hydroxycarbamide was a medication I used from very young too and it worked very well for me, I’m happy to hear that it works for your sons too and it is amazing that they are able to go such long periods of time without hospital admissions!
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@enorris you seem very intentional about the environments you expose yourself to which is amazing and I am sure that it does wonders in keeping you as healthy as possible!
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@dunblazin it’s great that it’s now a habit for you, and you’re right, it’s not just covid that the masks protect us from!
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@virus yes a lot of countries have scrapped their covid protocols, it’s important that we take our care into our own hands, especially during these colder seasons.
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A good nap can do wonders lol 😀 @virus
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@virus your home sounds very warm!!
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Hi @adagon23gmail-com, thanks for sharing this, I know people will read your contributions and find it helpful.
I find it so interesting that you were a part of the study and I am happy to hear that it works for you! Do you still use it today?
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@virus Lebanon looks beautiful!!! I’d love to hear more about your experiences there.
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@maryjawad these are very important things to pack!
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Ahh nice @virus!! Where are you spending your vacation?
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@virus that would make a world of a difference!!!
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I love what you wrote @basheerafoggie, it is something that a lot of people can relate to!
Overcoming these thoughts often feels like an internal battle. I also find that speaking aloud helps.
I am so happy that you have supportive family and friends around you, their love and acceptance makes all the difference!
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Hi @pinadaliaaol-com, you are more than welcome here!!! I really do hope that these forums are useful to you and your son!
I’m praying that your son finds it easier to manage as he grows older, and also that he’ll find good friends that will make his journey easier.
God bless you too!
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I agree 100% @virus, having people who are there for you makes the experience more bearable!
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Hey @viviane141, it’s good to hear from you & I’m glad to hear that you’re doing much better.
During this season it is so important to be on top of our health look after ourselves the best way we know how!
I hope things get easier for you ♥️
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Hey @viviane141, it’s good to hear from you & I’m glad to hear that you’re doing much better.
During this season it is so important to be on top of our health look after ourselves the best way we know how!
I hope things get easier for you ♥️
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Sounds like a good plan @lena-robbie! You know your body best, you know what it needs when it needs it, and as long as you pay attention to these needs I’m sure you’ll be fine!!