Overwhelmed: Cure for SC
There’s a cure for Sickle Cell. Imagine that, there is a cure for my illness.
For 27 years I’ve been told that I would have to be on antibiotics for life. That I would have to be constantly cautiaus in the way I lived my life incase I triggered a crisis.
The grey cloud has always loomed over just waiting for it to strike again, because you know that it will at some point. Constantly living with worry and fear.
But this week I found out there is a cure for SC, however, the UK government have refused funding. And so, there is a petition going around that will help reconsider the debate in parliament.
I sent a message out to my friends and family this week asking them to sign and the response has been overwhelming. I didn’t think people would actually care enough to do it but they have. I have had messages left right and centre with “of course we will”. That alone has meant so much to me, more then I can fathom.
People that I haven’t spoken to in years, friends of friends, people that I lived with at uni, people all over the world have been signing and sharing and it’s honestly filled me up with so much hope and love more then you could ever imagine.
I am so incredibly grateful for everyone that has signed and shared the petition. It shows that humanity is there, people are willing to work together and the world is full of kindness. In a noisy, bustling society people are willing to take a minute of their time to help.
I really hope I can be healed from Sickle Cell, and everyone else can too. It’s a horrendous disease that I accepted as apart of me. If you know me, then you know that I am always smiling, always dress up and always loving life, but inside my lungs are shrinking, my kidneys are damaged, spleen, gall bladder and tonsils gone, and my knees are struggling. I’m always tired because my body is trying to keep up with producing cells, and I struggle to take my medicine every night because of the side effects, and of course there’s that life expectancy limit which I’m not looking forward to.
But being cured would mean being free and fearless. Being energetic and excited for life’s adventures. Not having to worry whether someone will accept me or have doubts about being with me because of my illness. It’s such a nightmare having to explain this illness to someone to see whether they can handle it or not, trying to find someone that will love you enough to be there with you through the hurricanes that you have no control over. Not having to worry whether I will have healthy kids and whether I will able to be there for them 100%.
Not a year has gone by where I haven’t had to be admitted and drugged up. Not one year yet. It’s like your possessed when you have a crisis, like this pain gremlin that is just stabbing you so deep. (Sorry, maybe that’s a bit too vulgar but it’s true, and it’s embarrassing too)!
So please, if you haven’t already, can you sign this petition and help us make a noise. Help us to be heard and healed.
And thank you so much to everyone that has done so already, your actually helping to save lives. In under a week the amount of signatures have doubled.
I have popped the link below where you can sign, it honestly takes less then a minute. There’s also a short video about the treatment.
This managed to get to Parliament, please can we get Sickle Cell there too.
Lots of love SS xxx