Friday, September 30, 2011

Dr. Oz Raises Awareness of Pain in America

Per American Pain Foundation September 29, 2011 article:

The Dr. Oz Show interviewed top doctors this week about a familiar subject— pain. Dr. Oz was shocked to learn what so many of us live with every day.

Pain is prevalent, finding good pain care is hard, and women face discrimination when it comes to pain assessment and treatment.

Please take a moment to send a note to Dr. Oz, thanking him and his producers for raising awareness of the need for improved pain management in America!

If you have faced barriers to effective pain care, or have been told that pain is “all in your head,” be sure to share your story at the following link:
If you missed the show, you can view it online:

Dr.Oz show

Keep up with the American Pain Foundation on Facebook.
and Twitter @americanpain for the latest pain news and information.

Thursday, September 22, 2011

NHLBI New Sickle Cell Awareness Efforts

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


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

Saturday, September 10, 2011

True Sickle Cell Warrior - Adeja Johnson

In tribute to Adeja Johnson during Sickle Cell Awareness Month 2011.

A warrior is a person engaged or experienced in warfare or figuratively a person who shows or has shown great vigor, courage, or aggressiveness.

Adeja Johnson is one such person. She was a true sickle cell warrior.

Adeja fought sickle cell disease with the newly discovered procedure, Stem Cell Transplant. There are many complications of this treatment and the long-term effects are not fully known. Even with this procedure, there is still no "reliable" cure.

But Adeja and her family stood out in front of this battle with courage AND aggressiveness. As only a warrior would do, Adeja fought well and we are all better off because she did.

God bless you Adeja, I'll be looking for you in heaven.

See Video
Adeja Johnson Foundation

Saturday, September 3, 2011

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)