Sickle Cell Anemia

Hell I am Shae I have been writing since my mother passed away from complications of sickle cell disease when I was seven years old. I am very passionate about bringing more awareness and education through arts when it comes to myself. I am multi talented as writing is only one thing I do well. I also love to create all things as a filmmaker and a photographer. The amount of videos I have now as a brand influence making sure that I educate and empower those in my community and beyond. As a published author I am now working on pushing myself out of my comfort zone in regards to the types of works I put out into the world. As a sickle cell patient myself it is more than satisfying to know I am fully processing my own struggles and strength for people to relate with and learn more in the process. I am a single mom with a unique perspective of life with sickle cell disease. I intend to use all of my gifts share them with the world for as long as I can fight I will. #MightyTogether #SickleCellAnemia #sicklecellawareness #warrior

Learn more here and share your answers here: bit.ly/3AE7zC6

#RareDisease #Rare #MyastheniaGravis #CysticFibrosis #autoimmune #SickleCellAnemia #SickleCellDisease #Hemophilia #HunterSyndrome #HurlerSyndrome #GeneticDisorders

I keep seeing the 'We should just learn to live with it' suggestion as a counter to restrictions. And it fills me with rage. Abject rage, because I cannot help but find the sentiment so selfish and ignorant.

Eventually yes, when we have a well researched and globally regulated & recognised vaccine fine! But even then!- the battle for survival will continue.

And till then!- I refuse! I refuse to sacrifice the lives of the elderly; those with learning difficulties, those with chronic conditions; those with disabilities. All of us. We have worked too gosh darn hard to live. To etch out our own existences.

And they too have worked too hard: friends, family, carers (formal & informal) have worked too blooming hard to ensure lives are lived to let your discomfort kill.

As I type this I know and acknowledge that this is polarising and I type this honestly sad that it is polarising.

I type this knowing and having experienced the fear of wondering if my employer would keep me on. Experiencing furlough and wondering whether it would cover bills and debts that still needed to be paid.

I type this knowing mine and most likely your nation has entered into a recession. One of the worst since records began.

I type this knowing we have a mental health crisis impending, when mental health services were already globally struggling.

But sacrificing the lives of one person, older or disabled, is not the answer.

If it is then it speaks more about how our societies chronically undervalue the lives of the disabled and elderly. How care homes were left to fend for themselves in the initial days of the Pandemic and are still reeling from losses: www.itv.com/news/2020-05-19/care-home-deaths-under-scrutiny-...

It speaks how casually people assert 'Well they were going to die anyway, so 🤷🏿‍♀️'. As if that death, if even infinitesimally preventable, isn't a tragedy. As if it isn't a further stain on our overworked, under-resourced and underpaid health & social care systems.

This Pandemic is killing and it's killing cruelly and at times discriminately. BME/POCs/BIPOCs are dying at alarming rates globally: www.google.com/amp/s/www.bbc.co.uk/news/amp/uk-52219070.

So please, please don't even flippant entertain such a thing.

Listen to the fears of the elderly, disabled and chronically ill!

And listen to their hopes! That film they want to see! That best friend they need to chuckle with. That birthday party they can't wait to have!

We don't want to die. They don't want to die.

#ChronicFatigue #ChronicIllness #Depression #SickleCellAnemia #SickleCellDisease #Carer #Fibromyalgia #ChronicPain #DiabetesType2 #Diabetes #Anxiety #COVID19 #Asthma #HypothyroidismUnderactiveThyroidDisease #ThyroidDisease #IrritableBowelSyndromeIBS #Insomnia