May 2011: Open Letter to the Community

Hey everyone! I just wanted to say hello to all the lurkers (we see you;) and all the new members! It’s been a while since I’ve sent out an email blast, but there are a few things that are coming up that I simply had to share with you.

This is going to be long, so I apologize in advance. I’m quite wordy today…

First up, June 19th is World Sickle Cell Day! This is the day set aside by the World Health Organization to educate others about sickle cell, and help to get the word out globally. We all must do our part to start and keep the conversation going in our own little corners. For those of you who have other sickle cell groups, please let them know that it’s Sickle Cell Awareness Day on June 19th.
I would really appreciate it if everyone changed their profile pictures from June 12-June 20 just like we did at the beginning of the year. We can use the same image (our current profile image) that we used in January, unless someone has an alternate suggestion.  During each day of that week, on your twitter/facebook page, post a sickle cell fact to get the conversation going. Encourage people to get screened for the trait, donate blood, donate money to sickle cell research, and sign up for the National Bone Marrow registry. We desperately  need aid in all areas, and every little bit helps.

The second bit of news is that a few months ago, Lakiea Bailey, our very own brilliant researcher, accepted the co-admin spot! Yay!   Those of you that frequent the page often know that when you need current research, or any scientific fact, Lakiea is the one to go to.  In this day and age, it’s important for us to be able to separate fact from fiction, and Lakiea has an amazing quality of doing that.  She has been an invaluable cornerstone in our community and I look forward to seeing all the wonderful things she is going to accomplish in her life and in the sickle cell community.

The third piece of news is that, based on popular demand, I recently published a few articles on addiction. Many of us have been worried about this time and time again, and I think it’s important that we are armed with enough knowledge to overcome addiction, should we succumb to it. The articles are on the Sickle Cell Warriors website: Part 1: which deals with the definitions of drug addiction and , Part 2: gives us tips on Overcoming Addiction.

I hope this serves as a starting point for each and everyone of us to understand, recognize, and overcome the different struggles that we may encounter in our pain management protocol. For friends and family, please continue to be a source of support and encouragement as you have been. It can be quite difficult to overcome addiction, but it’s not impossible. We just need you on our side.

Please note that alot of discussions take place at the Sickle Cell Warriors Facebook Page. So if you have a question, issue, or need some encouragement; just write it on the front page, and someone should respond within a couple of hours (or in some cases minutes). Anyone can post a comment, and the community is kept vibrant by the fact that so many of us do participate.

As always, we would love people to share their personal stories with the community. There is an interview series on the website called Warriors in the Spotlight, that showcases the wonderful, amazing, talented, strong men and women all over the world that have sickle cell. Share your story with us at HERE.

In conclusion, please pray for all the warriors in pain or battling health problems at this very moment. The power of intercessory prayer and a shared global consciousness is real, so please lift up all our brothers and sisters today. So many of us are down, in pain, or in the hospital, and we could all use some well wishes and love.

Thank you once again for being a part of this community, and I hope that you will continue to do well. I’m so excited for the next phase of our journey together, and I can’t wait to share it with all of you.

Blessings and Love,

Tosin Ola, aka Sickle Cell Warrior