Sickle Cell Awareness Month - Globally

Global Sickle Cell Awareness

September is the best time of year. The weather starts to cool down as the earth moves away from the sun's summer heat. And, it is also Sickle Cell Awareness Month. Recently, I'm overwhelmed by the many activities related to this event. People are walking, talking, teaching, and even preaching about sickle cell disease this month.

         
My heart is very glad.      

However, I have been looking for something else. I've been looking for global awareness, global acknowledgement and global assistance for people with sickle cell disease. 

Guess what? I think I've found it.

There is a health care assessment "toolkit" created by PHG Foundation for countries to evaluate their health care needs, as it relates various diseases. Thankfully, they have included sickle cell disease. 

The PHG Foundation's Toolkit for Health Needs Assessment in Congenital Disorders has “country specific” data from sources like the World Health Organization (WHO). 

PHG's ultimate goal in developing the toolkit is to improve health outcomes of people with congenital disorders and reduce the burden of these disorders.

This toolkit is useful in many ways. Health administrators, health agencies, health departments, or anyone who determines healthcare policy and funding decisions, can use this tool useful in assessing current and planning future health care strategy needs.

If you are a healthcare professional, policy maker or health administrator please pass this information on to the people who make health care assessment and funding decisions in your country. 

Once they complete this assessment, they just might find justification for providing better health care for people with sickle cell disease.
 

Find out more information:

PHG Health Assessment Toolkit ~

PHG Foundation ~

World Health Organization (WHO) ~

~ WHO Chronic Disease & Health promotion 

  ~ WHO Genetic Diseases  

World Sickle Cell Awareness Day - June 19

  

Bringing sickle cell disease awareness and support to the world.    

  Writer's are telling their story   

Children are living longer

Supporter's  are walking

    Advocate's are educating

   Parent's are helping globally
 
Athlete's are speaking up  

  

Warrior's are really fighting 

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

September - Sickle Cell Disease Awareness Month (2012)

It all begins this week.

The New York Mets is sponsoring a wonderful event at Citi Field Stadium on September 8, 2012. New Yorkers will see, hear and support Sickle Cell Disease awareness through their favorite sport, baseball.

On September 15, 2012, The Hina Patel Foundation is sponsoring a Walk/Run to support Sickle Cell Awareness in California.

See pictures of this event at Flickr.com

The month is full of activities and events to bring awareness to sickle cell disease, as well as, much needed funds to many sickle cell disease related non-profit organizations for the services they provide.

Whatever you do this month to support Sickle Cell Disease Awareness, know that there are people suffering all over the world with no voice, no influence or power. They rely on people like you and me to SPEAK OUT, STAND UP, GIVE our TIME, TALENT & MONEY to support awareness and services for people with Sickle Cell Disease.

I don't have a lot of money, but as long as I have breath I will lend my voice, and anything else that doesn't hurt, to people living with Sickle Cell Disease.





Happy September!!!!!!

For more info about Sickle Cell Disease check out www.scinfo.org

NHLBI New Sickle Cell Awareness Efforts

Check out this link to the NHLBI new information center:
Sickle Cell Information Center

Also,

See National Institute of Health (NHLBI) Guidelines for Health Professionals on the Management of Sickle Cell Disease, (dated 2004) Planned for update in January 2012.

reference: Information for Health Professionals

Living Longer

In the United States when President Nixon signed the “Sickle Cell Control Act “ (1972) the life expectancy for people living with sickle-cell disease was 14 years old. In the rest of the world it was 5 years old (per World Health Organization).

Since that time, in America, treatment and care for pediatric patients was greatly improved. I remember going to a sickle-cell disease clinic in 1972 where doctors finally spoke to me about the disease and what it meant to live with it. I was twelve.

Fast forward to 2011, I’m fifty-one years old and many of us pediatric patients are still alive. We’ve lived passed the prognosis of death (14 years) and we are now in our fifties and sixties. This is where the story gets complicated. People with sickle-cell disease (since 1972) received better treatment and that extended our lives.

Currently, in America, healthcare organizations (and insurance companies) do not know how to deal with aging sickle-cell disease patients. Now that we’re living longer, we’re dealing with long-term complications such as; heart disease, stroke, renal failure, retinal detachment, leg ulcers, etc. etc. etc.

In addition, many sickle-cell patients are on Medicare and Medicaid. Since there are no clear guidelines on how to treat these aging patients, Medicare and Medicaid are not approving or reluctant to approve treatment & medications.

The National Heart, Lung, and Blood Institute (NHLBI) has recognized this issue and is addressing it by creating “Treatment Guidelines” for the medical community.

By 2012, the healthcare community will know “what the heck” to do with aging sickle-cell patients. They will have guidance on treatment and care of adult sickle-cell patients, just as they did for pediatric patients in the 1970s.

There is still work to be done to get Medicare and Medi-cal to NEVER DENY treatment or medication for people suffering with sickle-cell disease. But that’s a battle to be waged toward our elected officials by notifying them, “This is unacceptable!” First things first.

People with sickle-cell disease are living longer, thank God, and now the healthcare community will get information about treatment and care for us. All we want is to live happy and healthy lives, now someone’s willing to help.

Thank you NHLBI for taking the lead in this effort.

(Information from teleconference meeting held with NHLBI and various Sickle-cell Disease Advocates and bloggers September 2, 2011)

listen to meeting @ (855) 859-2056 #97067391, (give your name and Our Voice blog)

September - National Sickle Cell Awareness Month

Get smart about Sickle Cell Disease and Thalassaeemia around the world.

World Health Organization (WHO)

Sickle Cell Information Center

Sickle Cell Disease Foundation California

American Sickle Cell Anemia Association

Sickle Cell Disease Association of America

National Heart, Lung, Blood Institute

Is Sickle Cell Disease an epidemic worldwide? Check out the World Health Organization (WHO) report on Management of Haemoglobin Disorders.

Answer: Yes

Meditation May Reduce Pain

In a recent article by Salynn Boyles for WebMD Health News it was discovered that “after just four, 20-minute instructional sessions in mindfulness meditation, most participants in the small study experienced big reductions in pain intensity and unpleasantness of pain.”

In this study researchers recruited 18 healthy young adults who had never meditated prior to joining the study.

Over four, 20-minute training sessions, participants were taught a meditation technique known as focused attention, which involves paying close attention to breathing patterns while acknowledging and letting go of thoughts.

As part of my pain management I have also used the technique of “mindfully letting go of thoughts” as a way to manage pain.

However, I believe there is something that should be meditated on, the Word of God. As I let go of painful/hurtful/self-pity/anger filled thoughts, I meditate on the promises of God to help, heal and restore me.

Here are a few bible verses that attest to what I believe:

a. Hebrews 11:6 - “And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.”

b. Psalms 30:20 - “O LORD my God, I cried out to you, and you healed me.”

c. Jeremiah 17:14 - “Heal me, O LORD, and I shall be healed; Save me, and I shall be saved, for you are my praise.”

d. Proverbs 17:22 - “A merry heart does good, like medicine, but a broken spirit dries the bones.”

e. Philippians 2:5 - “Let this mind be in you which was also in Christ Jesus.”

My conclusion:

God has made promises of health and peace, both physically and spiritually. If we meditate on His word (and) promises, we will receive the peace (he promised), the joy (that comes with knowing Him) and the help (when we suffer).

This is what I know for sure; pain may endure for a night, but joy comes in the morning.

Meditate on that.

September - Sickle Cell Disease Awareness Month

SCDAA 38th Annual Convention
Washington, D.C.
September 22-25, 2010

Giving New Voice to Sickle Cell Disease

~100 Years of Recognition

Gaylord National Hotel and Conference Center, Washington D.C.

For more information go to Sickle Cell Disease Association of America:

http://www.scdaaconvention.com/

or

http://www.sicklecelldisease.org/