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World International Sickle Cell Day ❤️

It's been already over a week since I posted this on my Facebook wall to raise awareness. World Sickle Cell Day and Father's Day was Sunday, 19th June 2016. I had been meaning to post this on my blog but for some reason never got to, until my brother reminded me a couple of minutes ago that not everyone is on Facebook so I need to keep the momentum going for people like him (the non-fb users) So this was what I wrote that day: Sunday, 19th June 2016 My red blood cells are shaped like croissants and yours are round. Your Hb (blood count) might be 18 and mine could be 7. 10 is a lucky good day. My red cells get sticky in my blood vessels and restricts oxygen from circulating around the body, c

Florida's Waters

It's Sunday morning Dreamt of my walks on the silk beach sands of Neptune I wake up at Eleven A picture of my footsteps on these sands seem uneven Looking on Wondering what's at the other end of these waters An instant recollection of one of my fave tracks by Stone Mecca 'A walk' I love that song My sense of admiration of this place had almost had enough Wishing I had my iPod I hum the chorus almost loud in my head A little smile at myself as I snap my fingers to the unsung rhythm He gazes at me from a long distance across the shore I look up feeling the rays of sun hit my face I realise the depths of my my dips The soothing warmth of these waters I am wet from calves to feet

The American and the Eternal City

I met KC H Friday night I thought he liked my friend... Saturday evening, the penultimate day... We went for one drink Cabbed to the most sensational garden I have ever walked into It was magnificent I was intrigued at how sensational this was He kissed me, I melted to ice It was beautifully serene as he held me We talked about our past, growing up and our future We walked the Spanish steps He could have carried me through I said no I wanted him to come away with me We walked back to his hotel room I soaked in a moment - one full action and inaction The moment of truth but I walked away I left sadly alone to my hotel room next to the Vatican Feeling secure, yet invalidated by

Dejavu++

Alarm sounds twice only by a minute Eyes wide shut Body rising Setting off Voice at Bethnal Green Station Drives me mad with laughter My incessant crave for coffee and muffins Password logins Same TV series on Channel 4 Constant meet with the lady at the bus stop Mum’s call goes on voicemail Never see cash in my wallet Triple occurrence of entries while hovering I trip at the same spot Cell phone rings from my object of affection Everything I do on the PC He mentions exact same thing as another Thoughts battle As ambitions rattle Modifications of a routine Daily conscious experiences Or interpretations of repetitive occurrences I have already seen all these to last me a

A letter in Spring; Bulgarian Folklore

Sometime just before spring this year, I received a letter in a sealed envelope addressed to me from a lovely lady, a beautiful friend Eli, (my pet name for her) asking me not to open the envelope until the first of March. In my curiosity, I kept fiddling with the envelope trying to get cues of what may be contained in it. I gave up and decided to be patient. On 1st March, I opened it and found a handmade red and white bracelet made from wool and a letter in it. From Miss Petrova, the one who cares for me It was a letter written from Eli to me and it read:: Chestita Baba Marta, June (In Bulgaria: Честита Баба Марта , June) (This is something little from Bulgaria) On the first of March, Bulga

Midnight away from Morrocan Spells...

Was it de'javu that each time I drove on the A12 to his, on this 3 'laned' highway, I wondered if it was me he loved? The traffic lights shone so brightly in red when we stopped, it made me wide eyed as I strained my pupils to look through the dark amid this misty, foggy residue on the windshield. And then my heart stopped for a second. Anticipation, yearn, separation! The Uber-(ian) and I drove through the green, leafy area of the Woodford village. It was peaceful and quiet. It was a much desired relief coming from a bustling and noisy Marrakesh, through to a busy and packed North Terminal at Gatwick Airport. And with anticipation of my eyes besieging his handsome face, him standing there s

The Sicilian Connection

Sicily, one on my long list - of travel destinations. I actually have just wondered how I didn't manage to travel there when I visited 'The Eternal City' !!! One of those epiphanic moments eh... This post stems from me watching BBC's travel show the other weekend. This beautiful island in the Mediterranean with popular ruins, mountainous structures, the famous Mount Etna and splendid beaches yet with organised criminal syndicates. Such a paradox in itself you would think. What is the single most important thing famously popular to Sicily; - Cosa Nostra, The Sicilian Mafia!!! I often wondered whether people travelled for the Mafia tourism or to genuinely experience the landscape and scenic vi

Girl with a Pearl Earring; my quest for legendary vintage art

Johannes Vermeer painted his "Girl with a Pearl Earring" in 1665. Since then, the oil on canvas work has often been called "the Mona Lisa of the North" due to the young model's unreadble expression and mysterious identity. - Saatchi Gallery - Facebook post- 3rd November 2016 I am a lover of art but when I opened up my timeline this evening and saw this post, I had to record this opportunity in my gratitude journal. I was grateful for the opportunity to have seen the original painting at the Mauritshius museum when I visited The Hague with my siblings in June 2015. This painting is a 17tb C classic but there is something quite extraordinary and noveau about it which I find quite intriguing.

A gallery of my desires

My obscure object of desire fades As my Taxi approaches Heathrow T5 The signs I see are only the edifices I leave just before I acquire air mileage Yesterday I told you, you could be a world just born in mine With my initials signed and two xx's This one whom my knees are roughed to possess One I long to kiss from a rose Whilst I imagine his lady's potential doom To one possibility of having my best Summer's most Mahican flowers on full bloom I am enchanted I find this Irish soul appliquéd, embroidered and embellished on this season's own diatribes My heart supplies doses of a future path And whilst I day dream I feel even more fulfilled With little to muster I posses

Angel Jasmine

The night stars shone so bright It transpired to an epic night Filled with purity of love A reunion, a passion Jasmine just like the infused jasmine Fresh fragrance sweet and beautiful The morning fetched my heart a river of tears Death ever in its cruelty Snatched my beautiful Jasmine flower away The one my hands never held The one my eyes never beheld Her baby skin whose fragrance my nose never smelt Her innocence Her growth Her frailty Her lungs Her beauty Her gentility Her little life Taken away When she stopped breathing When she gave up When the doctors couldn't save her For the 1st year she couldn't live The birthday she couldn't see And the last day she could

Reti-No-Pity; I rolled my eyes so much, my brain hurt

One of the things I consider responsible, is the ability to act proactively and positively on the basis of knowledge. Many doctors and clinicians would know about diabetic retinopathy really well. Many members of the general public would. But they may not have ever heard of sickle retinopathy. People would generally get what you are talking about when you mention sickle retinopathy because of the known association with diabetes and vision. 1 in 10 people are diabetic. See? There is power in numbers. Majority of your Type 1s will be screened regularly for diabetic retinopathy. The last consultant who saw me told me if I was diabetic, they would be genuinely worried about my diagnosis. The f

A step from 'incurable' to disease modifying...

On 1st September – we had a small end-user consultation session for the Wellcome Trust Application organised by UCL/Kings College clinical partners at the Institute of Child Health close to Great Ormond Street by Russell Square. The aims were to provide information on a possible new treatment approach to sickle cell anemia called the In-utero transplantation & Fetal Gene Therapy and also answer questions/ get feedback on: the concept of the fetal stem cell gene therapy approach possible clinical trial ethical concerns related to the approach how they would want to engage in the grant and practicalities to improve chances of WT funding and MHRA approval in future. I work part-time, one day a

I did

If I dare say, it was the loneliest of times, the best of times, the worse of age, the best of laugh, a situation of choice, a step closer to my haven. My deadpan heart I embraced it all We glanced at jealousy At paranoia, an ugly picture of an improbable fate. I begged them Please keep your claws off my man My recollections of about a century of weeks ago where I walked into the store of greatness and I found him in the isle of cream and luxury Shades of light I picked him up He was heavy as I had him sit in the bags of my burdens He weighed so much in qualities and yes I paid for what had become my (his) excess baggage With an existing burden of proof I trolled on To g

Genome editing; The way for people affected by genetic conditions

Today, I attended the Genetic Alliance workshop to talk about genome editing and what this means for cancer and rare diseases such as mine. There were 250 applications nation wide and I was shortlisted as part of 17 to be an ambassador for this project. This isn't linked to my day job but my voluntary work with the sickle cell community in the U.K. My friend, Sajid was also there to represent Thalassemia, another similar genetic blood disorder like sickle cell. I adore Sajid. He is so damn witty. So, basically you have a complete set of genes in almost every healthy cell in your body. One set of all these genes, (plus the DNA between the genes), is called a genome. 23 of our chromosomes ma

My distressed heritage of pain

When Courtney asked me to write a blog on how I deal with pain, my immediate thought and response to him was - 'yes, sure but I must say, sickle pain feels like long history'. Does it? I asked myself. I was on a pain train. The positive side which I am grateful for is that the train has seized to move for a couple of years and I hope not to have this train resume it's movement ever again. The last time I had any sort of major sickle pain was in 2012. Before this time. I would have an average of one acute chest syndrome crisis in a year - specifically during the winters. My crisis were usually around this time of the year, predominantly my chest and back, throbbing in excruciating pain that r

June's Love for Juan Les Pins

Yacht filled harbors, fields of lavender, fragrance of fresh pine, Provence a' la marches, hip art galleries, vintage jewelry shops, rural mountainous hiking spots. bohemian sophistication, artists legacies breed, Art Deco architecture, volavents with fresh espressos on Juliet Balconets, David Sedaris' witty novels digested avec du vin rouge a' la fine fromage, sunglasses and flipflops whilst overlooking the seaside, sunset and glamorous beaches. Try to convince me how the Riviera cannot be my heaven on earth... 2.30am! Ring the alarm! "Bonjour Hen" I utter in a croaky French accent. Henry replied, "Non, June, Bonsoir" I giggled. "Ha! Very funny. Get up Hen, we have a cab booked for 3 for a

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