Intro

I started this blog in 2013 with the aim to raise awareness of sickle cell anaemia and to share my experiences but my efforts continually fell short, but if the last year has taught me anything it's that you have to make time for the things you're passionate about and the things that are of importance to you, so with this newfound mindset I've decided to restart this blog. 

Firsts things first...a bit about me:

Name - When I first started this blog I was so adamant on keeping it anonymous. At the time most of my friends didn't even know I had sickle cell, if you knew it was strictly on a need to know basis, and that was the way I liked it because I noticed that when I told people about my health they'd start to feel sorry for me and constantly give me allowances, which I hate. However I realised the more I talk about my experiences the more I am able to help others, be someone that others can relate to and make a significant impact on the sickle cell community. So, hi, my name is Tito.

Age - 21

Nationality - Black British (Nigerian)

Diagnosis - Sickle cell anaemia (HbSS)

What is sickle cell?
For those who don't know, sickle cell is an inherited blood disorder where the red blood cells are shaped abnormally. Ultimately this means that these sickle shaped cells can't carry as much oxygen as normal red blood cells. One of the main symptoms of sickle cell is that due to the lack of plasticity and the shape of the cells, blood vessels can get clogged and deprive the area of oxygen which causes episodes pain known as a sickle cell crisis. The red blood cells in my body have a life span of 10-20 days as opposed to the 90-120 day life span of cells in a healthier body, this, and the reduced amount of oxygen that the sickled cells can carry result in the development of anaemia, hence the name sickle cell anaemia (SCA). I won't get too deep into the biology of the condition but I’ve attached some links below if you want to find out more about the causes and effects of SCA. 

Growing up with sickle cell
I am the only one in my family with sickle cell and I continually thank God that it is just me. Having sickle cell has been a very challenging experience for me, especially because I went through a long period of time unaware of what it actually was. 
From a very young age I was clueless about the effect that sickle cell had on my life but I knew that there was something different about me. Maybe it was because of the constant reminder to drink a lot of water and to use my medicine, not being allowed to play outside with my friends when the weather was cold, or maybe it was the excruciating pain that only I experienced, I knew I had something called sickle cell but I didn't know what it entailed.
It wasn't until the age of 10 when I finally found out what was so different about me, this was when my year 5 teacher told me what it was. She explained to me that my blood cells are a "C" shape, not the normal "O" shape and that I would have to drink plenty of water and stay warm so that my "C" shaped blood cells won't stick together which would cause me a great deal of pain. The description she was very basic but it gave me a great deal of satisfaction, still what got to me at such a young age was the fact that it was my teacher who told me, not my parents. I do give my parents the benefit of the doubt, maybe they wanted to protect me from my seemingly harsh reality, I don’t know what their reason was exactly but I've moved on.

Aims
The aim of this blog is to not to look for sympathy, my diagnosis is something that I have come to terms with and I am happy with my life. However this blog is here for those with and without sickle cell to educate themselves and to see this condition from a different perspective. It's also here for those with sickle cell have something to relate to and hopefully you can take comfort in knowing that you’re not alone.

I have now been living with sickle cell for 21 years and I'm continually learning how to manage my health and live the life of a typical young adult. 

I'm really looking forward to restarting this blog and hopefully you'll benefit and learn something new from the experiences I share with you. 

If you have any questions you want to ask me or any experiences you want to share feel free to DM me on Twitter: @_titooye or send me an email: hersickledjourney@hotmail.com.  

Stay healthy,

Tito  


Links as promised:

Comments

Post a Comment

Popular posts from this blog

Here We Go Again

Image
“Caught Slipping” Whenever I feel ill I'd exhaust all my options to make my pain go away, drink hot water, use my painkillers, fill up my hot water bottle, find a distraction, sleep etc...and most times it works, but sometimes the pain is just so bad that I find myself calling 111 and they’d confirm that I should be calling 999......*sighs*. “Turn Yourself In” Whenever I’ve called 999 I’ve done it so reluctantly, but when I get a response (which is always & at the first ring may I add) I start to cry. I cry the tears caused by the pain which I’ve been fighting to hold back, I cry in the disbelief that my body could betray me to the point where I can no longer look after myself, and I cry because of the relief that has come from getting an answer, that the ambulance are on their way.  I’m such a different person when I’m ill and only a few of my friends can testify to this. You’ve seen me at my worst if you’ve seen me right before I’ve called the ambulance, it’s not cute, bu...
Read more

Flight Risk?

Image
The love I have for travelling is like no other. Travelling is something that I am fortunate enough to do frequently and it brings me so much joy. I love immersing myself in different cultures and experiencing different ways of living. However as someone living with sickle cell, travelling can be a completely different experience, for me it’s definitely a more stressful one. I’m writing this on a plane, Nigeria bound to spend the Christmas holiday with my family, and while preparing for this trip I was reminded about the worst crisis that I’ve ever experienced in this my 21 years of living. This crisis was on a plane and I was extremely underprepared for it, so to prevent this unpreparedness for anyone else I’ve listed a few things below that, as an individual with sickle cell, have to be considered while travelling: beforehand, during and while you’re abroad. (btw I’ll talk about my worst crisis in another post). First Things First   Pack for Every Situation - Tito a...
Read more

“You’re Just Not My Genotype”

Image
Just when you think sickle cell can’t get any more intrusive to ones everyday life … it does. I’ve explained how sickle cell can effect travelling , life expectancy and ones day to day life in general, and like thats not enough to deal with, when it comes to being in relationships, sickle cell presents itself as another hinderance. Just imagine finding the person of your dreams only to find out later down the line that you’re not physically compatible, you’re SS and your significant other is AS/SS. This will cause unimaginable heartache and it is something that we (those with full blown sickle cell and those with the trait) need to avoid at all costs. Before I continue with this post please please please understand that this is  solely based on the want to have children  later down the line. I personally can never bring a child into this world who has sickle cell. Having witnessed the pain & inconvenience that sickle cell causes, first hand & on a daily b...
Read more