Saturday, January 26, 2013

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."


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.

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

Monday, January 7, 2013

Sickle Cell Disease - 5% of World Population

Often times people with sickle cell disease are alone in their pain. They usually don't know another person in their community, school or family that has it. As a result, we feel alone in our battle with sickle cell.

I'm here to tell you (and me) that there are people all over the world suffering with sickle cell disease. And thankfully, we are finally joining to advocate, educate and support each other.

The World Health Organization (WHO) says "Approximately 5% of the world’s population carries trait genes for haemoglobin disorders, mainly, sickle-cell disease and thalassaemia."

According to the U.S. Census Bureau, as of January 7, 2013 the world population is 7,058,157,073. That is just the number of people who were "officially counted".

If we do the math, that means about 352,907,854 "officially counted" people have a haemoglobin disorder. If we add numbers of people from places like India, where all cases of sickle cell disease are NOT officially counted, that original number would be far greater.

We are not alone in our battle. Stats on Sickle Cell Disease Internationally.

Statistics are good, we should know how many people are suffering. However, we need more to be done besides counting us. Some organizations like the World Health Organization (WHO) report data and define strategies for prevention and control of diseases (like sickle-cell disease).

In response to a  resolution on sickle-cell disease from the 59th World Health Assembly in May 2006, specifically, WHO resolved to:
  • increase awareness of the international community of the global burden of these disorders;
  • promote equitable access to health services;
  • provide technical support to countries for the prevention and management of these disorders; and
  • promote and support research to improve quality of life for those affected.

World Health Organization (WHO) on Sickle Cell

What I'd like to see is WHOs (2013) progress on how well they're doing with those resolutions.......AND, if international health partners have joined to do their part for their countries.

As usual, in 2013 I'm going do my part. I'm going to seek, ask, and speak in behalf of people with sickle cell disease. Same purpose, same mission.

Read more: World Health Organization (WHO) on Noncommunicable or chronic diseases