Wednesday, December 10, 2014

American Society of Hematology - Sickle Cell Awareness

The American Society of Hematology had its annual meeting in San Francisco, Ca this past week.

Sickle cell disease was on the agenda and Dr. Dubaun gave an account of our struggles during his  Ernest Beutler Lecture Series presentation.

Take a look at the images of the people who help us live.

Flicker images here.

Sunday, November 30, 2014

Sickle Cell & Bioethics - What is it?

At the Johns Hopkins Berman Institute of Bioethics there is a vision of hope.


The Vision of Hope Project builds on the curriculum developed by the Initiative for Pediatric Palliative Care (IPPC) to help facilitate the learning of practices in providing comprehensive and integrated care for adolescents and their families.

What - originally piloted in a 2.5 day retreat-style and subsequent 60-90-minute in-service trainings

Where - at selected children’s hospitals throughout the eastern US.

Why - a holistic interdisciplinary model of care that incorporates emotional, spiritual, developmental, and physical dimensionsotional, spiritual, developmental, and physical dimensions.

Thursday, November 20, 2014

The price of fun - life with sickle cell

I recently attended my twin grand children's 2nd birthday party. I travelled to an area that recently had a rain storm. Though it had past, the chill was still the air. The chill got into my arm and that was it! I spent the next week fighting with sickle cell. I did everything I knew to NOT have a crisis. I used heat, pain killers and a whole lot of prayer.  Fast forward, I beat the odds once again.

As I age, I have to consider everything I do. I must consider travel time, what the temperature is, how much "FUN" I will be having, and recovery time from this fun.

My goal is to see these two babies graduate college, get married & have children of their own. This is my prayer. And, I'm going to do everything I can.....God see these wonderful days.

Thursday, September 18, 2014

Monday, April 28, 2014

Health And Human Services Funding For Sickle Cell

The US Department of Health And Human Services is offering grant funding for Sickle Cell Treatment Demonstration Centers in the United States.

HRSA Grant 14-078 expects to make four cooperative agreement awards (no more than one in any HHS region). Awards will be as much as $850,000 per year for the 3-year project period.

If you need help with the application process attend a free webinar on May 12, 2014 3pm est.

Applications accepted until May 27, 2014. check out Health Resources Services Administration (HRSA) website for details

Tuesday, April 8, 2014

Helping Children Understand Sickle Cell Disease

One of the saddest things is a child who suffers with a chronic illness asking...why me? 
In time of suffering, they feel alone, sad and angry that they're different. 

If we, adults, can help remove some of their suffering, we've done something special.
This is where The Cilly Cell Project begins.

Author Angel Woods has written a book, Jeffrey's Story, A Time of Sickle Cell Crisis written especially for children. Jeffrey's Story explains sickle cell disease and the issue of having a 'crisis' in a way that a child can understand. Cilly Cell is a big part of this story as well. 
Here's my interview with Ms. Woods:

1.  Give us some background about why you wrote this book. I wanted to put something out there to help educate children and spread awareness using CILLY CELL as a teaching tool. I felt like she may be someone they would listen to.

2. What did you know about sickle cell disease prior to writing this book?  I was born with Sickle Cell Hemoglobin C Disease. I suffered some as a teen but I suffered more in my adult life once I started having children. I was not educated on this disease as a child. I had to learn the ends and outs through my own suffering.

3.  What have you learned?  I'm still learning everyday but I've learned a very important lesson about how differently this disease affects everyone. You will see a lot of similarities but the doctors fail by treating every patient the same. What I know is education is very key. If we can be taught as a child to have better eating and drinking habits, we wouldn't have to struggle so hard as adults to get rid of our bad habits. We were given certain foods as natural healing aids and they work. 

4.  How can this book help others? This book will give insight on what may be considered a typical day for someone with this disease.  A Sickle "crisis" can be very spontaneous. Children with Sickle Cell will be able to relate. My hope is that other children will become more aware, educated and compassionate towards the children who suffer with this pain everyday.

5.  What is the one thing you want readers to remember?  I want my readers to remember to eat healthy, that CILLY CELL is a symbol of hope and believe in the healing power of Jesus. On the back of the book you'll see above CILLY'S head "Divine Health, Hope, Healing". Awareness and education are only the beginning for The "CILLY CELL" Project. The bible says, "A merry heart does good like medicine." One of the reasons CILLY CELL was created was to bring joy and laughter. When children see CILLY CELL it makes their heart glad, and then healing has begun.

6.  What are you doing to bring awareness to sickle cell disease?  Along with this book I have a website and Facebook pages where I'm able to share information. I also have brochures and other items (water bottles, wristbands etc.) that I use to spread awareness. I want CILLY CELL to be an awareness message without words because of her shape that the world will recognize and support; like the pink ribbon did for Breast Cancer. I will begin to do more awareness rallies this year in various states starting with Georgia. I'm willing to come to your town.

7.  How can we purchase this book? Check out and also available at

Contact Angel Woods directly at:  
email -
on Facebook
on twitter

Thursday, March 27, 2014

Understanding Sickle Cell Pain

Samir K. Ballas, MD is a professor of medicine and pediatrics at Thomas Jefferson University in Philadelphia and honorary staff member of HEMORIO, the Hematology Institute in Rio de Janeiro. He formerly directed the Adult Sickle Cell Program of the Commonwealth of Pennsylvania for the Philadelphia Region.

 Dr. Ballas knows blood and he also knows sickle cell disease. Who better than he to write a book about sickle cell pain.

His new book Sickle Cell Pain , March 2014 is a 752-page book that links sickle cell pain to basic, clinical, and translational research, addressing various aspects of sickle pain from molecular biology to the psychosocial aspects of the disease.

The book also addresses in great detail inequities in access to care, stereotyping and stigmatization of patients, the implications of rapidly evolving models of care, and recent legislation and litigation and their consequences.

The world is getting smarter about sickle cell disease thanks to people like Dr. Ballas. Cheers to you for this very important life's work!

Saturday, March 8, 2014

Support Students With Sickle Cell

The Center for Disease Control (CDC) offer tips for parents and care givers of kids with sickle cell. We need everyone on the team; doctors, teachers, and school administrators. Check out this flyer for more information: CDC Tips for Supporting Students

Also, see CDC's - Sickle Cell Disease link

Saturday, February 1, 2014

Sickle Cell Patient Focused Drug Development Meeting

Date: February 7, 2014
Time: 10 a.m. to 4 p.m.
Location:FDA White Oak Campus
10903 New Hampshire Ave.
Building 31, Room 1503 B and C (Great Room)
Silver Spring, MD 20993
(Information about arrival to FDA's White Oak campus1)
Registration:To register for this meeting, visit:
Registration has been extended and will close on February 3, 2014.

Webinar Module handouts available here