Sickle Cell Disease America

Sickle Cell Breakthrough! Stem cell procedure could soon help cure thousands of adults with sickle cell disease

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Thu, 10 Dec 2009 00:22:00 +0000

Sickle Cell Disease Breakthrough!

Dec. 9: A breakthrough stem cell procedure could soon help cure thousands of adults with sickle cell and other inherited blood disorders. NBC's Robert Bazell reports. (Nightly News)

Visit msnbc.com for Breaking News, World News, and News about the Economy

More HERE >>> http://health.usnews.com/articles/health/healthday/2009/12/09/bone-marrow-transplants-may-cure-sickle-cell-in.html

Sickle Cell Trait: Ryan Clark Fight On!

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Fri, 27 Nov 2009 11:58:00 +0000

As reported by John Harris at pittsburghlive.com, Steelers free safety Ryan Clark said he couldn't wait for the morning after Monday night's big game against the Denver Broncos.

ASCDF.org says: H/T To John Harris for this great article.

In football vs. life decision, life wins

By John Harris, Pittsburgh Live.com

"The oddity of the situation, it's something that a lot of people don't understand. I don't think there's ever been a situation where a guy had to choose football (over) maybe a life-threatening sickness,'' Clark said last week.

"I can honestly say I will be happy Tuesday morning when I get back to regular life.''

In a manner of speaking.

Clark's life will never be regular as most people know it.

He lives with a rare form of the sickle cell trait, an inherited disorder that caused his blood to "sickle'' two seasons ago due to the high altitude in Denver.

Despite receiving clearance from the Steelers medical staff, Clark didn't play against the Broncos last night.

In the two games that Clark has played in Denver — one with the Steelers, one with the Washington Redskins in 2005 — he totaled 12 tackles.

Two thumbs up to Coach Mike Tomlin for keeping Clark out of the lineup.

From a football standpoint, it's not like the Steelers haven't played well without a key defensive starter this season (see: Troy Polamalu and Aaron Smith). Veteran Tyrone Carter is a more than an adequate backup at safety. And he showed it last night, returning an interception 48 yards for a touchdown for a 7-3 lead in the first half.

Carter, not as fast as Clark, was position deep in the secondary. Denver, known for its short passing game, didn't test Carter long early, as Clark watched anxiously from the sideline. Carter was in the right place, though, when he picked off Kyle Orton's pass and took it to the end zone.

From a peace of mind standpoint, the mere thought of Clark possibly enduring again what he went though two years ago — on Monday Night Football, in front of a national television audience, no less — was a frightening prospect.

Imagine the fan and media reaction across the country if Clark, for whatever reason, was forced to leave last night's game, if only to catch his breath. The backlash against the Steelers would be immeasurable for allowing him to play — medical clearance or no medical clearance.

Tomlin shed more light on Clark's situation when he said a pre-existing medical condition could be the reason why Clark became almost deathly ill following a game in Denver in 2007.

Missing the final 11 games that season (including one playoff game) was the tip of the iceberg for Clark, who lost his spleen and gall bladder in separate operations.

Forget about not ever playing football again.

Clark could have died after playing in a football game.

Some trade-off.

On second thought, why was there even any consideration about Clark playing last night?

If there was even a tinge of hesitation by Clark not to play, so be it.

Clark said his condition is rare for someone who doesn't have sickle cell disease, only the trait.

My brother-in-law has sickle cell disease, which is more deadly than the sickle cell trait. Doctors told him he'd be fortunate to live past his 20s. He turned 47 in September.

Dr. Rodney E. Hill, a physician in northeast Ohio, said it's very common for people with sickle cell disease to have their spleen and gall bladder removed.

"Clark has a variant of it that's a little bit more than the trait, but not sickle cell disease itself,'' Hill said. Read More HERE

Sickle Cell Trait: Athletes with Sickle Cell Trait Need to be Cautious, Says Dr.

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Fri, 27 Nov 2009 11:46:00 +0000

As reported in the Norwich Bulletin by Dr. Anthony Alessi, African-Americans, who have the sickle cell trait must be cautious about competing at high altitudes. Sickl

Dr. Alessi writes, "Two years ago, Ryan Clark of the Pittsburgh Steelers nearly died after playing in Denver. He required emergency surgery to remove his spleen and gall bladder. Ryan, along with one in 12 African-Americans, has the sickle cell trait and must be cautious about competing at high altitudes."

The Dr, notes, Sickle cell disease affects the ability of red blood cells to carry oxygen. It is an evolutionary adaptation that provides resistance to malaria and is found in people who come from areas where malaria is endemic like Africa, the Middle East, South America as well as the Mediterranean, Caribbean and other areas. The decreased oxygen-carrying ability of hemoglobin results in damage to a variety of organs including the brain, lungs and spleen.

Sickle cell disease differs from the sickle cell trait. The trait is found in those who have both a normal and a sickle component to hemoglobin. During intense exertion, dehydration or conditions that decrease oxygen, red blood cells change their shape and clog blood vessels throughout the body.

The condition can also result in a potentially lethal breakdown of muscle known as acute exertional rhabdomyolysis. Read More of the article HERE

Sickle Cell - Testing Athletes for Sickle Cell Trait - News from Oklahoma

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Thu, 26 Nov 2009 18:44:00 +0000

As reported by news Ok.com testing for the sickle cell trait is inexpensive, easy and potentially life-saving. Still, some NCAA schools don’t do it.

The folks at News Ok.com are also report that Oklahoma is the leader in sickle cell testing. In 2007, Dr. Randy Eichner, then the team’s internist, and head athletic trainer Scott Anderson co-authored a consensus statement for the National Athletic Trainers’ Association on how to reduce the risk of sickle cell-related deaths.

Testing was at the top of the list.

"It’s just crazy to me that not all schools test,” said former Sooner linebacker Curtis Lofton, who discovered he had sickle cell only after being tested when he arrived at OU. "The test, it’s really not an expensive test to do on your athletes that bring in so much money to a school.”

The initial screening costs about $10 an athlete. If that test is positive, there is a $30 test to confirm the findings.

Research obtained by CBSSports.com earlier this year indicated that complications from the sickle cell trait have become the leading cause of death among NCAA football players this decade.

One of the biggest issues in dealing with players who have sickle cell is that a sickling episode may look like it’s heat-related, especially since intense and prolonged physical activity can cause them. Knowing that a player has the sickle cell trait is the best way to avoid a problem.

Sickle Cell trait, Colleges and Black Folks

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Thu, 26 Nov 2009 17:59:00 +0000

The website The colorlines.com has a great article on the issue of "The Danger of Testing for Sickle Cell." In the article written By Aisha De Avila-Shin, she talks about how Colleges are screening for the blood disorder, but will this be another round of discrimination?

It has been three years since Dale Lloyd, a Black student at Rice University, collapsed during a light football workout and was rushed to the hospital. The next morning, he was pronounced dead. According to doctors, Lloyd died because of complications due to having the sickle cell trait.

As part of settling the lawsuit with the family, the National Collegiate Athletic Association recommended this fall that colleges screen all athletes for sickle cell. However, people who know the racial history of sickle cell testing are raising red flags.In the 1970s, mandatory screening for the sickle cell trait occurred in the U.S. Army after four Black recruits died during basic training.

The deaths were attributed to the sickling of the cells, and the federal government decided to bar people who had the trait from certain military sections, including the Air Force. Because one in 12 Blacks in the U.S. carries the sickle cell trait, the policy had a disproportionate impact on this racial group.Nine years later, Stephen Pullens, a Black cadet, sued after being forced to resign from the Air Force Academy because he had the sickle cell trait.

Pullens had already shown that he could work at high altitudes, and he was a champion hurdler. Due to his lawsuit, the requirement to be screened was revoked.

Were those four deaths in basic training due to having the sickle cell trait, or was the sickling of the cells a manifestation that happened after their deaths? Read More HERE

The American Sickle Cell Blog asks: Is the article written By Aisha De Avila-Shin on point? Will colleges screening for the sickle cell trait be another round of discrimination? What do you think?

What should a national Sickle Cell Disease organization such as ASCDF to make sure discrimination does not happen?

Sickle Cell - Autopsy: Heart illness killed WCU athlete Ja'Quayvin Smalls

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Thu, 26 Nov 2009 17:45:00 +0000

An Autopsy report says a heart illness killed WCU athlete Ja'Quayvin Smalls. According to reports in the Citizen-Times newspaper, Ja'Quayvin Smalls died from “acute lethal cardiac dysrhythmia due to cardiomyopathy,” according to an autopsy done by Dr. Lawrence Selby and released Tuesday.

Selby found that sickle cell trait and exertion contributed to Smalls' cardiac arrest, though during an interview he downplayed the possibility sickle cell trait played a role in the July 8 death.

The inherited blood disorder is made more dangerous during strenuous exercise. The NCAA had recommended in June, shortly before Smalls' death, that all of its schools require sickle cell testing.

WCU started testing athletes for sickle cell trait after Smalls' death.

“I know that's kind of the hot topic, and that's what Sporting News and ESPN were, not directly saying, but kind of alluding to as a diagnosis,” Selby said. “From the stuff I have, I just can't substantiate anything like that.

“As far as I'm concerned, it's a cardiac-related death related to an enlarged heart,” he said.

Sickle cell

An expert shown the autopsy report by the Citizen-Times said sickle cell could have contributed to Smalls' death.

Selby said Small's heart was slightly enlarged and that he had an irregular heartbeat with premature ventricular contractions during a fever five years ago.

The 20-year-old junior defensive back collapsed during a sprint workout after complaining of cramps.

Lisa Salberg, founder of the New Jersey-based Hypertrophic Cardiomyopathy Association, said that's a warning sign of a condition that can cause sudden death. Read More HERE

Sickle Cell Trait /Disease? - Officials to exhume body of 'Real Housewives of Atlanta' star Kandi Burruss ...

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Thu, 26 Nov 2009 17:20:00 +0000

The New York Daily News reports that the first autopsy concluded that Jewell died of blunt force trauma to the head, but later there was a report that sickle cell disease was another cause of death.

Williams/Getty

Kandi Burruss and A.J. Jewell were engaged, but later split after filming stopped on 'Real Housewives of Atlanta.'

T-Boz Struggles With Swine Flu

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Wed, 25 Nov 2009 13:31:00 +0000

As noted on the American Sickle Cell Disease Foundation website and reported the blog popeater.com

With her diagnosis of sickle-cell anemia and recent brain surgery, Tionne "T-Boz" Watkins isn't a stranger to sickness. But her recent bout of the H1N1 virus, also known as swine flu, came as a complete shock.

The former member of girl group TLC and her daughter decided to see a doctor after having sore throats for three days. He told them that her daughter had flu and T-Boz had swine flu. "I was like, 'This is unbelievable,'" she told Life & Style. "I made arrangements right away for my daughter to stay with my mom."

"He gave me antibiotics and antiviral medications like Tamiflu and Levaquin, as well as a low dose of steroids," she said. "I had to stay in the house and away from everyone."

Although the H1N1 virus is known to be potentially life-threatening, T-Boz never felt her life was in danger. Read More HERE

“Dynamic Women Organization of Delaware Valley" launch Sickle Cell group in Delaware

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Wed, 25 Nov 2009 13:13:00 +0000

As noted at the American Sickle Cell Disease Foundation, Inc. and reported by Alaskai Moore Johnson, Health Correspondent of the Liberian Observer.com

A group of Liberian women led by Estella Wehye, under the banner, “Dynamic Women Organization of Delaware Valley” based in the United States of America, is expected today to launch a sickle cell foundation in the United States of America.

Estella Wehye

A dispatch from the U.S. says the Sickle Cell Foundation for Liberia will feature as guest speaker a renowned medical doctor, Dr. Kwaku Ohene-Frempong, MD of Children Hospital in the US state of Philadelphia.

According to a release, the event will showcase some US-based Liberian musicians, including the famous Zay Tete and one of the Delaware Valley’s best DJs who will keep the audience on their toes all night, the organizers said. Read More HERE

Welcome to the American Sickle Cell Disease Foundation, Inc.

noreply@blogger.com (The American Sickle Cell Disease Foundation, Inc.) — Wed, 25 Nov 2009 12:29:00 +0000

Welcome to the American Sickle Cell Disease Foundation, Inc. - Blog.

We are a national non-profit organization designed to help develop new, progressive and effective ways of bringing a consistent national voice to the issue of Sickle Cell Disease. The Sickle Cell community will now be heard in the national health care debate.

We plan to address the years of national neglect, misinformation, failed approaches and lack of national attention to the issue of Sickle Cell Disease in America. We hope you enjoy blogging with us. We plan to talk about about all sorts of issues related to sickle cell trait, sickle cell disease and the challenges of the disease. We also want to be able to talk about the great things people are doing around the country to address sickle cell disease. There are a lot of great stories to be told, we hope you will enjoy this blog.

Feel free to comment on any blog post, and let your opinion and feelings be known.

The Blogmaster -American Sickle Cell Disease Foundation.