Sikcell: People living with Sickle Cell

We still Hope

P.Allen Jones's Blog (34)

Men With Sickle Cell Wanted

Calling all Warrior men.

We need your voice! There are numerous projects happening right now that need your input, including a prominent men's magazine interested in profiling a few of you, speaking engagements, awareness and education projects and opportunities to travel and share your story in 2016. For more information please contact us at Info@sicklecellconsortium.org.

Added by P.Allen Jones on September 20, 2015 at 11:42am — No Comments

Sickle Cell Trait

What does Sickle Cell Trait look like? My grandchildren.

When a baby is born they are given newborn testing of their genetic history through blood. My grandbabies we're tested and found to carry sickle cell C hemoglobin. I knew there was a chance that they'd be carriers, and so did my children.

Nothing can prepare you for the fact that your results came back, and confirm the news. But this time we're prepared. Information about sickle cell trait is known. The stigma has… Continue

Added by P.Allen Jones on December 13, 2014 at 12:32pm — No Comments

Parent & Child Interview Research Opportunity

I GOT THIS EMAIL BELOW FROM A SUPPORT GROUP....not sure if its legitimate, but check it out. There's payment for your efforts.

~~~~~~~Message begins here:

Just a quick note to let you know about a paid research opportunity for Schlesinger Associates -- a national market research company. Schlesinger would like to interview parents of children ages 4-14 with sickle cell disease, and the child.

The interviews will be conducted to test a questionnaire that will be used… Continue

Added by P.Allen Jones on March 16, 2014 at 2:26am — No Comments

Speaking, Teaching, Living

Every one of us can do something. Educate our doctors, teachers, and family. We don't have to just take the "treatment" we receive. We CAN do something to help the cause of telling the world..."Sickle Cell Disease Hurts!!!"

Here's my contribution:

www.blogtalkradio.com/duewafraziershow/2013/10/27/interview-with-author-p-allen-jones

Tell us yours.

Added by P.Allen Jones on October 28, 2013 at 4:00pm — 2 Comments

June 19 - World Sickle Cell Awareness Day

See WHAT'S UP

and by the way.....what are you doing this year?

Added by P.Allen Jones on June 14, 2013 at 4:17pm — No Comments

Sickle Cell In Costa Rica?????

Costa Rica.....really? Yes, OUR VOICE examines one group whose helping people with sickle cell disease in this Central American country.

Visit OUR VOICE to learn…

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Added by P.Allen Jones on April 4, 2013 at 7:09pm — No Comments

Web Education From Information Center

Ge t information about web seminars for sickle cell disease our world-wide source for information.

CDC Sickle Cell Information Center Important seminars coming…

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Added by P.Allen Jones on March 26, 2013 at 6:00pm — No Comments

Submit Your Comments To Survey

Added by P.Allen Jones on March 12, 2013 at 3:52pm — 1 Comment

Sickle Cell In Ireland

We all have seen the map of Africa and told sickle cell disease is primarily found in this region. Well I've got news for you, it's in Ireland too. Check out my latest blog post www.sicklecell-ourvoice.blogspot.com and see what's going on (or not) in Ireland.

Added by P.Allen Jones on February 9, 2013 at 6:11pm — No Comments

NCAA Testing & Newborn Screening

At a recent 2013 NCAA national conference sickle cell testing of athletes was approved. (see NCAA link for article)

Some people agree, some disagree but there could be a bigger issue. Newborn screening!…

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Added by P.Allen Jones on January 25, 2013 at 5:03pm — No Comments

Treatment Guideline for Adults - Public Comments Wanted

Hello Everyone, I was notified on Twitter that the US National Heart, Lung, Blood Institute (NHLBI) is requesting public comment on the "New" treatment…

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Added by P.Allen Jones on August 10, 2012 at 1:16pm — No Comments

Sickle Cell Event Flyers

I get so many flyers for sickle cell awareness & fundraiser events I don't know where to put them. I do feel obligated to share, so I will post some flyers here and on Facebook or Twitter . Here are two events:

One event I…

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Added by P.Allen Jones on August 1, 2012 at 8:54pm — 1 Comment

NHLBI Soon To Update "Management of Sickle Cell Disease" Guideline

Hey everyone, keep up with my Twitter account @pallenj - for important information that needs your comment.

Soon.....we (people with sickle cell & public) will be allowed to comment on the updated National Heart Lung Blood Institute (NHLBI) 'red book' - The Management of Sickle Cell Disease guideline (see the team working on this…

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Added by P.Allen Jones on June 21, 2012 at 5:05pm — No Comments

Priapism - Pain Only A Man With Sickle Cell Disease Knows

Check out www.sicklecell-ourvoice.blogspot.com to find out more about Priapism. God bless our men who have sickle cell disease!!!!!!!!!!!

Added by P.Allen Jones on June 11, 2012 at 7:22pm — No Comments

Sickle Cell Stem Cell Cure?????

Check out my latest blog about the subject of Sickle Cell Cure....Is it true? Is it permanent?.....who knows????

Added by P.Allen Jones on May 4, 2012 at 9:27pm — 2 Comments

One Voice for Sickle Cell Speaks

On Sunday March 18, 2012, 10am -12pm (pacific time), I will be on Sunday Morning Live radio show discussing my book I Only Cry At Night and…

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Added by P.Allen Jones on March 17, 2012 at 12:44am — 2 Comments

Singer Celine Dion Cares About Children With Sickle Cell

Singer Celine Dion gave a concert in Las Vegas, Nevada for Children's Hospital Boston "Play Without Pain" Sickle Cell Disease Fundraiser. Read more at Our Voice.

She raised over $6 million for children with SCD!!!!!!…

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Added by P.Allen Jones on January 26, 2012 at 12:07am — No Comments

New Year Resolutions

2012

Hey Everyone, let's ask our friends, co-workers, and church, or whomever we know to donate blood....or organize a blood drive to support sickle cell awareness....AND blood bank supplies.

We may not be able to do much, (if we're sick) but we can ask for…

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Added by P.Allen Jones on December 16, 2011 at 1:30am — No Comments