Wednesday, September 7, 2016

Sickle Cell Coalition & The State of Sickle Cell

This is progress!

There is a group of medical professionals, clinicians, advocates, drug manufacturers legislators & researchers who have teamed up to create a new world for sickle cell sufferers. That new world looks bright and hopeful... Check it out

Sickle Cell Coalition
The State of Sickle Cell (the report)

Thank goodness for the #SickleCellWarriors who keep this subject (our lives) on the table of discussion...

We won't stop talking, we won't be discouraged, and we will win!!!

Just watch us

Saturday, April 9, 2016

Better Not Broken - Sickle Cell Disease




Recently, I spent a wonderful time with a support group of sickle cell warriors from The Cayanne Wellness Center in LA, California.

I was invited to talk about "Healing Through Journalism" and as I reviewed my book "I Only Cry At Night, the subject was confirmed to me. My past journals revealed the truth, that I had released the pain I carried from childhood through adulthood in its pages. There is truth in the belief that "we" can't and shouldn't carry our pain, or our past, if we want to live a full and happy life. We must learn to "let it go" and journaling worked for me.

As I re-read the book, I remembered the events and saw the people, places and events. The difference for me is that they are on paper, in my book, not in my heart. What we all agreed; was that those challenges made me better not broken.

Get a journal and try it. Let the tears fall just like the words, on the paper.

Find out more about P. Allen Jones

Happy journaling!

Saturday, February 27, 2016

Three Strikes You're NOT Out - Sickle Cell


This is an inspirational story of The Tyler sisters, who all got Sickle Cell Disease from both parents who only had sickle cell "trait".

This is why sickle cell testing is critical prior to getting married or having children, because it gives you valuable information. It will let you know (the probability) of having children with the disease. But don't let this testing deter you...you can't fight love. If after you've married and had children, and  your newborn test positive for sickle cell disease there is still hope for your children.

Just look at The Tyler girls....living, managing and thriving.....also known as #blessed.

Find out what their doing through their foundation
 

Monday, December 28, 2015

2016 - New Year - New CDC Pain Guidelines

So many new possibilities for people with sickle cell disease. The medical community is tripping over itself to claim "The Cure", but until we ALL can live pain-free, I stay on the mission.

We have a new generation of people with sickle cell trait not knowing the facts about possible challenges they may face. We have to be transparent with the truth, however uncomfortable. Again, that's my job.

Here's some truth, New CDC Chronic Pain Treatment  Guidelines open for comment - The CDC has posted the Guideline for Prescribing Opioids for Chronic Pain, along with supporting documents on the Federal Register for a 30 day public comment period ending January 13, 2016.

The notice is on the Federal Register - 31375

Friday, November 6, 2015

New Perspective- Living With Sickle Cell

This picture sums up my summer of 2015.

A trip to Utah to meet my newest granddaughter Kyndal, led to a health scare that I must take seriously. Utah, at 4400 feet elevation, is bad for me in the winter. Winter cold mixed with lower oxygen levels is not good. I know this. But it's June, my birthday month and I just HAD to see my baby be born supposedly on my birthday. Neither happened and everything went downhill quickly.



It's all better now, but it gave me a new perspective....I want to live. I MUST do EVERYTHING right, then put the rest in Gods hands. My granddaughter lives in Kansas now, elevation 1230 feet. So elevation problem solved.

I'm getting back to family, friends, and advocating for people with sickle cell disease......and staying the heck out of Utah!!!!!!!!! Finally!!!!!!!