Tag Archives: Sickle Cell

New Online Sickle Cell Community

Sickle cell disease patients and those who stand with them are invited to pre-register for free access to oneSCDvoice.com, an empowering online community launching later this month (December).

Promoted as “A Sickle Cell Community Tailored to You,” oneSCDvoice will deliver trustworthy information to help people affected by sickle cell disease know more about it, learn of promising new treatments being tested in clinical trials (and how to access those new treatments as a clinical trial participant), more easily tap into needed support, and above all improve the quality of their lives.

oneSCDvoice.com is the creation of sickle cell healthcare providers, advocacy leaders, pharmaceutical manufacturer Pfizer, Inc. and health technology company rareLife solutions.

This collaborative digital education platform provides professionally vetted links to credible information about SCD, about lifestyle issues related to the disease, and about how to get more and better help coping with this devastating genetic condition.

http://www.prweb.com/releases/2017/11/prweb14939636.htm

https://www.onescdvoice.com/

World Sickle Cell Day, June 2015

World Sickle Cell Awareness Day is June 19th. The General Assembly of the United Nations adopted a resolution on June 19, 2008 recognizing sickle-cell disease as a public health concern. World Sickle Cell Awareness Day provides an opportunity to increase understanding of Sickle Cell Disease and how it affects individuals and families worldwide.

Sickle Cell Disease is one of the most common inherited blood disorders affecting 70,000 to 80,000 Americans and millions of people world-wide.

Sickle Cell Disease is common among people whose ancestors come from Africa; Mediterranean countries such as Greece, Turkey, and Italy; the Arabian Peninsula; India; and Spanish-speaking regions in South America, Central America, and parts of the Caribbean.

The World Health Organization (WHO) has estimated that Sickle Cell Disease contributes to 5% of the deaths of children younger than 5 years of age in some African countries. While an increasing proportion of affected children now survive past 5 years of age, many remain at risk of premature death. With early detection and use of public health interventions such as penicillin, many of these deaths can be prevented. Additionally, the burden of this disease can be reduced with increased global resources and effective partnerships. Your help is needed in the education and spreading awareness of Sickle Cell Disease.

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In My Own Head

Poem by Davinna

Disappointment
Led to my feelings of disjointment
But my anointing phases all the pain
I am faithful and guided though im misguided with handling the pain

I looked at life as a trap
Faithful but still adapt to the devils constant breadcrumbs of the fame

He is in my head
He attacks me in my bed
Amplifying my feelings of distain

I write for truths
To give to youths
Who struggle in his name

Im crazy……not stupid
Sometimes…..I lose lucid
To fight off what it is that stains…
My brain is wired to work
To speak my worth
After a life of your never gonna be shit insane

I’m the same
Yet different
I cloak myself in difference
To be a rider in the game

One day it will all make sense
I will see over that fence
To greener pastures in his name

Until then I will crash
My behavior turned up on rash
Either your in or out
The melody is the same

I have lost friends who couldn’t see in me
Didn’t believe in me or get my walk of justice in his name
Seeing no evil of my struggles everyday

No one understands the hand of the fates
Clotho spinning
Lachesis determining places,worth and feelings…
Screw this
Atropos please give me the damn scissors so I can cut the thread

Dont want to be dead
But I fear if or when im dead
No one will get or still understand
My pain

I fall and get embarked by the dark
Slithering light
telling myself get back up to participate in this game

I climb these crystal stairs
Hoping not to break the panes

Break my ways

I break for days

I break for shade

I break in shame

To hide in when im not the same to revel in me not the same..to getting back to me being the same
I keep the pain
Hiding in my brain

But a break is necessary
I brake for necessity
A learned condition of hiding all this pain

Im an actress but you didn’t know my role existed
I guess im gifted at hiding behind all this pain
I cant run

Or hide

Or get by with the weight of this……

The questions always exist when its detrimental to my brain
I underscore pity
Leaving out the precious gifts my family gives me
Its the definition of insane

System failure
Lets reboot

“As obedient children, do not be conformed to the passions of your former ignorance”

Peter said it all
even though the knowledge is tall
I still fall to repeat the same mistakes

The missed takes of my mistakes
Leading me to wrong
The questionable
leads me to questionable in head interference

Can’t seem to clear this
Bowling spares because im unable to strike within this brain……

I know this story

I live this story

I want to change this story

And I will
I will, AMEN

 

 

WORLD SICKLE CELL DAY 2013

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In 2008 the General Assembly of the United Nations adopted a resolution that determined Sickle Cell Disease a public health problem and one of the world’s foremost genetic disease. The result was that June 19th was declared as World Sickle Cell Day to heightened awareness, activism, diagnosis and management of SCD around the world.

The Heart of Gold Foundation Inc. of Northern Virginia invites you to join our first 2013 World Sickle Cell Day balloon release ceremony in honor of those who have lost their lives to SCD and to raise awareness that SCD is a global health problem!

WHEN: Saturday, June 22nd

TIME:  10:00 a.m. To 12:00 p.m.

WHERE:  Fort Ward Park, Area 1

4301 West Braddock Road

Alexandria, VA 22304

THEME:  Speak Up

Speak Out

Speak, About Sickle Cell

The ignorance of Sickle Cell has led to the ignoring of Sickle Cell

Gallery

6th Annual Sickle Cell 5k

We couldn’t have asked for better weather for the 6th Annual Sickle Cell 5k. The course was set up in the heart of DC, starting at Freedom Plaza. Continue reading