[Tito Oye]

Wishing you and your family all the best Des! ❤️

[Tito Oye]

Yeah carrying a bottle of water is so handy!

[Tito Oye]

Hi Viviane,

Thank you so much for sharing this letter. It is something that I know a lot of people with sickle cell can relate to.

The way sickle cell can is so intrusive and can affect every single area of our lives, and everyone in them too. We can never make our health a second thought, it always has to be a priority and unfortunately it gets in the way of a lot of the time.

On top of dealing with sickle cell, we have to deal with peoples ignorance which makes it even harder.

I do hope that this letter gives people more of an insight into life with sickle cell and they become more empathetic to others with the condition.

Again I just want to thank you for your strength, and from one sickle cell patient to another, you’ve got this, keep your head up!!! ❤️

[Tito Oye]

I’m happy you’ve found something that you love to do, something that is also so meaningful.

I feel like patients make the best health care practitioners, you are able to relate more to the people you look after and provide them with a greater standard of care.

[Tito Oye]

Support groups are so essential!!

 

Viviane I hope you’ve been able to still connect with them all and that you are all doing well!

Kassem we are so thankful for people like her – people who just make everything better!

[Tito Oye]

I forgot to mention folic acid, I use it too! Do you notice the effects of folic acid?

[Tito Oye]

❤️❤️❤️

[Tito Oye]

I’m definitely the anomaly in this case loool. Now that the weather has cooled down a bit I’m starting to enjoy it!

[Tito Oye]

Ahh thank you, it’s good to be back!

Ethan, I am happy to hear that reverse isolation has been working for you and your family and that your son has been able to stay hospital free. I do hope the pain goes down. What has been useful when it comes to managing the pain?

[Tito Oye]

Hi Viviane,

Oh wow. The way that focus has shifted onto the coronavirus has unfortunately caused a lot of negligence in other areas of healthcare. I hope you recover quickly so you can get back to work!

Also, what made you want to become a nurse?

[Tito Oye]

Ahh I’m trying 😂😂😂😂

[Tito Oye]

Vision problems are something that I am only recently starting to experience myself. I have quite a few visual/retinal migraines that can cause me to lose vision completely in my eyes for a brief moment of time.

I have been seen by specialist eye doctors and I am waiting for my follow up appointments just so we can get a better understanding and know if it is sickle cell related.

Have you been able to attend an appointment yet Steve?

[Tito Oye]

I don’t think they realise how much we appreciate the support they give!

[Tito Oye]

These are very important tips Kassem and they all have a role to play when it comes to maintaining weight.

I definitely need to work on the food area 😅

[Tito Oye]

Steve this is completely normal in individuals with sickle cell. Find that I struggle when it comes to being consistent with my diet too! To help I try and eat smaller meals more frequently. I also try and buy healthy snacks to munch on during the day.

I came across a post on Instagram by a nutritionist that I found extremely informative… feel free to check it out!

https://www.instagram.com/p/CBnWUXeJqTw/?utm_source=ig_web_copy_link

[Tito Oye]

Hi Karen,

How have you been finding the treatment so far?

[Tito Oye]

Do you know of anyone with another sickle cell genotype? I recently came across someone with the sickle cell beta-thalassemia genotype.

[Tito Oye]

I feel like it is so rare for sickle cell to be taught in schools. What year/grade/educational level were you in when you were taught this?

[Tito Oye]

It is so important for us to listen to our bodies, if we don’t then we learn the hard way. Once we are in tune with our bodies then we have a better understanding of how we can efficiently navigate through life!

[Tito Oye]

This is so true!

We are in a situation which no-one was ready for, and health care professionals are trying to figure out the best thing for us and they are trying to give us the most accurate information. That being said, the information is very limited, but I will share what I have come across:

https://www.sicklecellsociety.org/coronavirus-and-scd/

[Tito Oye]

Hey Steve,

 

I had no idea excitement could cause the same reaction! I am definitely going to read into this.

Sorry to hear that it has gotten worse, what has been the most effective thing you have tried so far?

(By the way, feel free to keep writing, your contributions are very helpful!!!)

[Tito Oye]

Hey Steve,

Giving these things up when I was younger was definitely harder as I didn’t understand why I had to give these things up, and a lot of my peers were still so active, but now I’m older I understand that it is definitely for the best!

[Tito Oye]

Hey Karen!

Wishing you all the best with your new treatment & I hope to learn a lot from you!!!

What does this treatment entail?

[Tito Oye]

Hi Colleen,

Thank you for your advise, you are right sometimes you have to accept the situation and give yourself the best possible chance of success. I will definitely take this on board for the future, thanks. In terms of the interview at the Credit Union, don’t worry, this is all just part of the process and I am sure in no time (if you haven’t already) you’ll get something better!