Friday, August 10, 2012

NHLBI Seeks Public Comment on "Draft" 2012 Sickle Cell Management Treatment Guideline

The National Heart, Lung, Blood Institute (NHLBI) is requesting public comment on the "New" treatment guideline for adults with sickle cell disease. (due August 31, 2012)

The original document (dated 2002) tells the medical community "how to treat people with sickle cell" AND it needs to be updated.


Check out NHLBI website for more info on how to add your comments (or see links below)

Public Review and Comments Due: August 31, 2012

Disposition of Public Comments
How to Review and Comment
Review and Comment Form, Excel (xls) file, 44 K (Form must be returned by email attachment to

Being Pro-active about "OUR" health, this OPPORTUNITY is "OUR" chance to tell doctors what "WE" think should be done to treat Adults with Sickle Cell Disease!!!!!!!!!!!!!!!!!!.

See the current Management of Sickle Cell Disease (2002) version

Thursday, August 2, 2012

Sickle Cell Plain Talk

As a patient with Sickle Cell Disease, I often hear words like “Thrombosis” and they mean absolutely nothing to me. Doctor’s use terms like this and expect us to understand. What they don’t realize is that we “patients” need straight talk. We need them to make it plain, and basically, tell us the details in regular terms.

Once, when I questioned a doctor who was explaining something very important to me. I asked her to "make it plain" and she got irritated. Her facial expression said it all, but I wasn’t affected. I asked for and expected an explanation in plain talk.

Most of my doctor’s appreciate my pro-active health management style, some don’t. One reason I started this blog was to speak in terms that everyone could understand. I try to breakdown hype words like "cure" and define words like “Thrombosis” so that we can understand what it is and how it affects us.

FYI - Thrombosis is a blood clot that blocks the flow of blood. If blood flow is blocked to tissues, oxygen supply is reduced. If oxygen is reduced too long then tissue cells begin to die. For people with sickle cell this is important because our blood flow can be (and usually is) blocked by sickled red blood cells. The last thing we want is for our legs, arms, internal organs, or any part of our body to not get enough oxygen.

Also, deep vein thrombosis (DVT) is the formation of a blood clots within a deep vein leading past our hips. A blockage here can be life threatening.

As always, the information I relay is not to scare anyone or over glamorized our physical limitations. I believe “Information is Power.” If people take information and use it to manage their health, better communicate with their health care providers and become educated about their bodies, then we can be pro-active in managing our health.

Learn about your body, how it works, what affects it, and how you can improve it. Don't be afraid to know more, talk to your doctor and ask them to “make it plain.”