Dec. 17, 2015

Comment by Lillie Thomas


KEEP ADVOCATING, NEVER STOP!! Share your truths, your opinions, your experiences!

I have been Advocating for this disease for almost 27 years. I have NEVER been afraid to tell people in this un - UNITED community how we lack teamwork, UNITY and
strength!

Trying to ADVOCATE my daughter's FREQUENT and UNPREDICTABLE PAIN CRISIS AND MANY OTHER SERIOUS COMPLICATIONS was like trying to swim upstream back in the 80's and still today.

I often asked myself during those early years of raising my baby wth SCD, WHY IS THIS PARTICULAR COMMUNICATE NOT UNITED AS ONE FOR OUR CHILDREN. I cried many nights, until one day I learned that crying wasn't gonna get me anywhere.

So, I started ADVOCATING, teaching and EDUCATING, especially the doctors and nurses who entered my child's path and journey. And to those you didn't care or got tired of me telling her story.

Many people didn't know how to handle/except my candor, bluntness, TRUTHS AND EXPERIENCES. I frankly didn't care, getting my daughter through this sickle cell journey was my main goal.

My other main goal was to STOP the OVERWHELMING LACK OF KNOWLEDGE AND IGNORANCE ABOUT THIS DISEASE! Even while stepping on the toes of the arrogant and those who thought and think they knew more than me about this disease we lived 24/7. Proud to know that there is another WARRIOR out there that speaks their mind without fear! I LOVE your Advocacy/Education posts! !

So, I say to you again, keep on ADVOCATING YOUR TRUTHS, YOUR OPINIONS AND YOUR PERSONAL EXPERIENCES.