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

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

Pre-Existing Condition - Affordable Care Act & Sickle Cell Disease

According the the US Health & Human Services (HHS) the Obama administration moved forward today (November 20, 2012) to implement provisions in the health care law that would make it illegal for insurance companies to discriminate against people with pre-existing conditions.

The Affordable Care Act (aka Obama Care) beginning in 2014, prohibits health insurance companies from discriminating against individuals because of a pre-existing or chronic condition.

This is wonderful news for people in the US living with sickle cell disease. We will NOT be penalized by denying medical coverage or being charged more for health coverage because we have a disease. This sounds very fair to me!!!!!

Read for yourself:

HHS News
Healthcare.gov Affordable Care Act - general info
Features of the new healthcare law

Treating Sickle Cell Disease With Transfusion Therapy

 

From time to time I get request from people to write guest blogs on the subject of Sickle Cell Disease and associated treatments. I encourage my readers to read, research and write about sickle cell.

 

I do not endorse any one treatment or the guest blogger's comments, but I do want my readers to be involved in the process of treatment analysis.

 

I have my personal opinions about the subject of "Transfusion Therapy" and its associated risks, i.e. causing Iron Overload (damage to liver, heart & other organs), Alloimmunity (immunity against transfused red blood cells & antibodies that target and destroy the transfused blood cells), Hyperviscosity (sticky blood which can cause stroke, higher blood pressure), and Transmission of virus' (more transfusions could = more chance of transferred blood infection). But, I'll keep my opinions to myself.

 

What I will say is; "Know the benefits AND risks with any treatment or 'cure'. Talk to your doctor and weight them for yourself, then decide what treatment is best for you."   

 

This guest blogger is Alex Kerwin, a Michigan-based freelance writer from Central Michigan University. Outside of writing, he helps organizes support groups for those struggling with addiction.

"One of the leading treatments for sickle cell anemia is transfusion therapy.

 

The Seriousness of Transfusion Therapy
Transfusion therapy can save the life of a patient with sickle cell anemia. In other cases, transfusion therapy can protect organs from becoming damaged by the disease. The treatment is very serious and requires much attention to detail. Any doctor without extensive knowledge of sickle cell anemia may wind up causing new complications that would otherwise never occur.

Red blood cells are very complicated to handle in a medical fashion. However, if the procedures are performed correctly, the transfusion therapy will have very beneficial results. Transfusion therapy will cause a suppression of circulating cells that have been deformed by the disease. This helps to reduce episodes of pain and other symptoms by introducing healthy and well shaped red blood cells into the body.

The Many Types of Transfusion Therapy

Transfusion therapy can be performed in a variety of ways. Simple transfusion, erythrocytapheresis and partial exchange are all methods of transfusion used for specific cases. The most extreme cases would usually benefit from a treatment of erythrocytapheresis. Whichever specific method is used, transfusion works by introducing new cells into the body. This blood can be of any age, because age usually has no impact on the blood.

The major debate about transfusion therapy is related to the lack of knowledge of how the body may react to cell transfusion. There are many potential dangers when receiving cell therapy. The main goal of transfusion therapy is to add more healthy red blood cells in order to remove the threat of the sickle shaped cells. The problem is red blood cells contain iron. When a patient receives numerous blood transfusions, they may accumulate too much iron in the body. Transfusion therapy is a serious operation that should be discussed at length with the doctor before any decisions are made."

Sources:

 

http://scinfo.org/guidelines/transfusion-therapy

http://www.ihtc.org/medical-professionals/blood-disorders/sickle-cell-disease/transfusion-therapy/

http://health.nytimes.com/health/guides/disease/sickle-cell-anemia/treatment.html

 

Thank you Adam, I really appreciate your time and effort to educate people about this therapy.

 

 

 

 

 



Ryan Clark - From Sickle Cell Disease Tragedy To Triumph

 

While intellectuals are "writing" abstracts on how to care for people with Sickle Cell Disease, Ryan Clark is "doing" something about it.

Ryan knows first-hand the effects of loss that surround living with sickle cell. As he states, "The loss of my sister-in-law & my own life-treatening experience with sickle cell gave me insight into the intense agony people with the disease go through daily."

What Ryan is "doing" is through his foundation Cure League which is tackling sickle cell.

Their goals are:

"Work together to fund research studies and develop sickle cell disease educational outreach with end goals of:

• Finding effective new sickle cell disease treatments
• Identifying a cure for sickle cell disease
• Expanding patient access to comprehensive sickle cell disease care (in PA)
• Increasing public awareness and reducing the stigma associated with sickle cell disease.

This is putting money, time & talent where your mouth is.

You go get'um Ryan Clark & Cure League. I'm cheering you on over here and people with sickle cell disease thank you in advance.

Now, go win that Super Bowl for PA!!!!!!