I am genotype SS and I am in my 40s old – Twitter user.
A Twitter user that goes by the name Devaan in a sheer act of inspiring other sickle cell sufferers, took to her Twitter handle and shocked the public that she has been a sickle cell patient all this while and have battled with numerous health challenges associated with being genotype SS. She said in spite of the negative narratives about sickle cell patients not living beyond 20 years, she is in her 40s, happily married with children and have a promising career in politics plus other fields.
Read her inspirational story yourself…..
“I am genotype SS. Growing up I was so used to being desperately sick and having blood transfusions that I thought it was something all children experienced. I grew up listening to doctors tell my mum not to have high hopes I might not live to be 20. My parents accepted their fate.
Today I’m in my 40s. If my parents were alive they’d be grand parents. I have had a career spanning broadcasting, the development sector and politics. All of which I excelled at. I’m married. I’m still alive. It has NOT BEEN AN EASY ROAD not for me or loved ones. But…
I DO NOT HATE OR RESENT my parents for having me.
Despite the pains and tears I’m glad to be here and go through this journey. I am genotype SS. Doesn’t mean those without it ALWAYS enjoy perfect health and no other challenges. In fact give me Sickle Cell over a number of other health challenges. I’d rather not be genotype SS but I am so..
No shaking Now. My advice to all young adults is this: Know your genotype early and be sure (do it more than once in reliable labs). Get an education about the health implications associated with whichever …one you happen to be. When you meet people you think you might want a relationship with, start the conversation EARLY. If however you are already deeply committed to someone BEFORE the genotype issue comes up, seek PROFESSIONAL COUNSELING from medical personnel, clergy etc
Take an informed decision. While things are not always bleak in a home with an SS child or children, caring for a sick family at the best of times is stressful both for the patient and the caregiver. Bear this in mind. You don’t want to watch your child writhing around in pain …without relief sometimes for weeks or becoming physically challenged. However my emphasis remains AVAIL yourself of every information you need to have then make an informed decision.
God help us all.
You are stronger than your pain. You guys are the real definition of Strong! I once dated an SS, and I do say living you life everyday on a pill is not for the faint hearted! Kudos and I am glad you are happy! You will definitely see your grand kids and great!
I wish I could share your story with a family that just lost a child over the weekend. An inspirational story it is. God is awesome.
Thank you Madam for this sensitisation. May God preserve you upon goodness. Love will fade when the trials of SS comes in children and I know what my friend went through. We need education over blind love or relationship.