World Sickle Cell Awareness Day - June 19

  

Bringing sickle cell disease awareness and support to the world.    

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The United Nations considered “recognition of sickle-cell anaemia as a public health problem” and in 2008 passed a Resolution urging Member States and United Nations organizations to "raise awareness of sickle-cell anaemia."

At the time, they called sickle cell "...among the world’s foremost, and at times most lethal, genetic diseases -- at national and international levels." 

So, by Resolution, they distinguished 19 June of each year as World Sickle Cell Awareness Day to encourage relevant parties to strengthen health systems and primary health-care delivery.

Fast-forward to 2013, and there's a global effort to bring sickle cell awareness, better treatment, better care, stigma removed and a cure to all people who suffer with this disease.

Offer your comments on Facebook World Sickle Cell Awareness page.

What are you doing?

World Sickle Cell Awareness

Sickle Cell Disease In Ireland

In 2001, the National Children's Hospital in Tallaght, Ireland published a abstract review of sickle cell disease in the Irish Journal of Medical Science. After reviewing patients with haemoglobinopathy (genetic defect of the blood's haemoglogin) their conclusion was: "The increasing number of children presenting with SCD as a result of the increasing refugee numbers requires a comprehensive care approach similar to that required for paediatric haemophilia to ensure optimum care."

That was in 2001. It is now 2013 and the world is a much smaller place with migration & immigration not uncommon in many countries.

In 2009, Irish Medical Times wrote an article"Explosion of sickle cell disease could mean early deaths," they wrote, "There are currently more than 400 children with SCD in Ireland (up from 12 in 2000)."

This was in 2009. If we do the math, in Ireland from 2000-2009 there was a 3,333.00% increase in the number of children diagnosed with sickle cell disease.

In the same Irish Medical Times article, Dr. McMahon, haematologist at Our Lady’s Children’s Hospital in Crumlin, said "There is no service for adults with SCD and neither is there structured funding for children with the disease. “If we don’t get our act together, we’ll have adults dying at age 40 or 45.”

The article further states, "A vulnerable population cannot make noise, and parents of children with SCD have been scared of being deported."

WHAT!!!!!!

To add insult to injury, in 2011 The Irish Times wrote an article, "Stigma is a 'curse' on sickle cell disease." ******Stigma is defined as a badge of shame.***** So, now we have pain, suffering AND stigma for children and adults living with sickle cell disease in Ireland. 

It's now 2013, somebody please tell me that Ireland has turned things around and are now addressing the issues that Dr. McMahon described.

She said, “With treatment, patients can go on to lead happy, fruitful lives. Without treatment, it can be a drain on the State until these people die at age 60. This doesn’t need to happen.”

I HEAR YOU Dr. McMahon and people living with sickle cell disease in Ireland. I wonder if the medical community & political leadership in Ireland are hearing you too??????

Check out Ireland Sickle Cell Fund forming in Ireland. Launch Day May 2013.

Sources:
Irish Journal of Medical Science (article archived by US National Institute of Health)
Irish Medical Times
The Irish Times

World Sickle Cell Awareness Day - June 23-24, 2011

The Sickle Cell Disease Association of America (SCDAA) and the Centers for Disease Control and Prevention (CDC) cordially invite you to join us in the celebration of World Sickle Cell Awareness Day to be held June 23 - 24, 2011 at the World Congress Center in Atlanta, GA.

The theme of World Sickle Cell Awareness Day:

Educate and Unite highlights the need to increase awareness of the global impact of sickle cell disease(SCD) and the importance of uniting global support for promoting and improving the health of persons with SCD through "increasing global action to reduce child mortality in SCD."

The celebration will begin on Thursday, June 23rd with a national press conference and private reception. It will culminate on Friday, June 24th with presentations by a number of SCD experts and panel discussions with several international representatives.

For more information and registration:

www.scdworldday.eventbrite.com/

June 19th - Sickle Cell Disease World Day at UN

The United Nations (UN) celebrates the first annual Sickle Cell Disease World Day at the UN in New York.

I can't help being happy, excited and overjoyed. The United Nations General Assembly approved a Resolution proposed by the delegation from the Republic of Congo Brazzaville and co-sponsored by 24 Member States.

June 19th of each year was established as Sickle Cell World Day at the UN.

This years activities include: Testimony Stand exhibitions by patients' organizations and international organizations, an art exhibition on the disease, panel and round table discussions, a First Ladies and Royal Highnesses meeting, and a gala dinner.

In partnership with UNICEF, the World Health Organization (WHO) and the UN, this Sickle Cell Disease World Day event will bring global awareness to Sickle Cell Disease and its growing public health problem.

If you're in the New York area (or can get there by plane, train or automobile), please get more information and support this worthy event.

For more information: email Sickle Cell Disease International Organization (OILD/SCDIO) info@drepanetworld.org


United Nations http://www.un.org/News/Press/docs/2008/ga10803.doc.htm
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