Wednesday, January 18, 2012

A New Day Has Come For Children With Sickle Cell Disease

(photos by Denise Truscello/ WireImage)

On January 15, 2012 Play Without Pain: Children’s Hospital Sickle Cell Benefit at The Colosseum in Caesars Palace began with Gary W. Loveman, Chairman, Chief Executive Officer and President of Caesars Entertainment Corporation thanking everyone for supporting this life-changing event. He explained the alarming statistics of children suffering and dying from the complications of sickle cell disease, and the important work being done at Children’s Hospital of Boston to find a cure. “Children’s physician-researchers have done what others have tried to do for decades; they’ve found a way to override the sickle cell defect,” he said. Mr. Loveman then introduced the team of doctors led by Dr. Stuart Orkin and Dr. David A. Williams, who are behind the breakthrough strategies to “flip the switch” on Fetal Hemoglobin F (HbF) and cure sickle cell disease once and for all. “Hope,” he said, “is in sight.”

Enter Celine Dion and Rene Angelil, AEG Live, Children’s Hospital Boston, Southern Wine & Spirits, Angel Management Group, Restaurant Guy Savoy, and countless other sponsors too numerous to name. Only heaven bestows such star power. The rest was history in the making.

As Celine walked onto the stage, a new day dawned for children with sickle cell disease. When she began to sing angels smiled, clouds parted and the rain of hope fell like a beautiful waterfall. With the voice of perfection, accented with flawless wardrobe changes, and make-up sprinkled with tears, Celine’s heart was fully exposed.

While I listened to Celine perform, like only Las Vegas could contain, I looked around the Colosseum in amazement. I was witnessing history. When Celine cried, I cried. God allowed me to live to see the dawning of this new day.
(photo of Celine and A.J. Green, young man with sickle cell)

As Celine sang, my heart sang,

“I see a light in the sky
Oh, it’s almost blinding me
I can’t believe I’ve been touched by an angel
With love

Let the rain come down and wash away my tears
Let it fill my soul
And drown my fears
Let it shatter the walls
For a new sun
A new day has come
A new day has come.”
(song by Aldo Nova & Stephen Moccio)

I may not see a cure for my sickle cell disease; I’m too old for these new procedures. I see, however, the light shining for children with sickle cell disease…………can you see it?

Thank you Melanie, Caesars Palace, Celine and Rene, Children’s Hospital of Boston, and the numerous sponsors of Play Without Pain: Children’s Sickle Cell Benefit. You are all partners in giving the gift of life. Put on your sun glasses, it’s gonna get bright.

(photos by Denise Truscello/WireImage)

Sunday, January 8, 2012

2012 - The Year of SCD Awareness

All I can say about the coming year of 2012 is WOW!!!!!.

I have heard more about Sickle Cell Disease in the last six months than I have in the past five years. That is partly due to the tireless voices of SCD patients speaking out, SCD Associations not giving up the fight, and a renewed national commitment from American government agencies like National Institute of Health (NIH/NHLBI)) and Center for Disease Control (CDC).

What the focus seems to be leading toward is psycho-social help and improved care/treatment for adults with SCD. That is a good thing.

Another good thing is the 2012 calendar filling up with events, support services, conferences, and meetings about Sickle Cell and related blood disorders.

Our Voice, the voice of people living with sickle cell disease, will continue to speak out bringing information and education globally. I'm excited about the future so stay tuned. I'll post events as they come my way.

One big event coming January 15, 2012 is Celine Dion at Caesars Palace. She will play a charity show to support Children's Hospital Boston "Play Without Pain Children's Sickle Cell Benefit."

This is a wonderful thing!!!!!



Click here for ticket information & concert link

Thursday, December 15, 2011

New Years Resolution

(blood donor at Boston University)


On September 1st, 2011, Charon Simmons 22, went into cardiac arrest not once but twice and had multiple organ failure.Due to multiple organ failure, Charon needed over 75% of his blood replaced for a survival chance of living. He received multiple transfusions of red blood cells and platelets as a very important part of his treatment.

Charon has Sickle Cell Disease.

On Janurary 7th, 2012 The Sickle Cell Foundation of Orange County (CA) is sponsoring a Replenishment Blood Drive and Bone Marrow Screening in honor of Charon Simmons. The public and many friends of Charon are encouraged to donate blood in support of his journey back to health. (contact info@scdfoc.org for more information)

Charon's story reminded me of the millions of people (world-wide) who also suffer with Sickle Cell Disease and need blood transfusions.

If you're one of those people who makes a New Years resolution, add to the top of your list for 2012....
1) Give the gift of life - give blood.

If you can't give blood (you suffer with health issues), then plan a blood drive and have your friends and family support you. We can all help somebody who's hurting this new year, let's put some effort in being our brother's & sister's keeper.

Have a blessed New Year!!!!!!!!!!!!
www.redcross.org

Tuesday, November 29, 2011

Iron Overload



Did you know if you get 10 blood transfusions (in your lifetime) that you are at risk for iron overload?

No? I didn't either.

What is iron overload?

Healthy red blood cells usually live 120 days, damaged (sickled) cells live less. People with sickle cell or Thalassemia sometimes need to get a blood transfussion.

When we receive a blood transfusion we get more "hemoglobin", which helps our blood carry more oxygen. This is one reason we feel better after a getting a transfusion.

The blood in the transfusion also puts iron in our body. Over time, this iron builds up and our body has no way to get rid of it. It does not eliminate iron like other waste. This is Iron Overload (IO).

We can still have anemia AND have too much iron.

Too much iron can build up in our body (after 10 or more transfusions), even if a long time has passed between transfusions. (I DIDN'T KNOW THIS)

Iron Overload (IO) can lead to serious health problems, both now and later. Too much iron in your body can: (1) weaken your immune system, (2) cause sexual dysfunction or infertility, (3) heart failure (4) Liver damage (cancer), and (5) Diabetes.

Find out more information on Iron Overload (IO) and what actions you can take to be transfusion smart.

www.betransfusionsmart.com

RedCross.org

Wednesday, November 9, 2011

Young People With Sickle Cell Need Help Too!

Young people with Sickle Cell Disease often wonder, "Why me? Why do I have to have this disease?"

These questions often lead to anger, despair and resentment. This resentment often leads to non-acceptance of their illness and to ignoring the need to take care of themselves.

Death amoung young people who are in transition from childhood care to adult (self-managed) care is entirely too high.

These young people in transition need our support, love and encouragement. They also need to see examples of older adults "living" with Sickle Cell Disease and living well despite the difficulties.

Here's some help and resources:

Teen Health - Childrens National Medical Center Transition Education

Teen Health - KidsHealth.Org - Transitioning Your Medical Care

Pyschosocial Help - New Jersey Department of Health

Living with your teen - North Carolina Department of Health