Recently, I was browsing the channels when I saw the show “Totally T-Boz.” For those of us who grew up in the era of the female singing group TLC, that title is intriguing. Especially, when you know that one of the group members has Sickle Cell. T-Boz (Tionne Watkins) battled with Sickle Cell all of her life and recently dealt with brain tumors and many other setbacks as Warrior. I was particularly excited to see a well-known figure acknowledging the pain of Sickle Cell and more importantly someone living with Sickle Cell. I thought, finally, someone would bring light to the pain of Sickle Cell on a greater scale. Finally, a voice!
Then as I thought about it more, she is A voice, just one. While I am excited to see that she is bringing some kind of awareness to the #1 blood disorder in America, she can not be the only one! To make a real impression on the hearts of America, it will take more than one voice. Personally, I have watched other communities rise from the ashes of nonexistence to worldwide recognition. Seriously, everyone knows what pink stands for in the store. Even though he was recently dethroned, everyone knows about the Live Strong bracelets. What are we missing as a community of Warriors and Warrior Caregivers? Why are we waiting for someone else to do the work? Why are we chasing waterfalls like the song by TLC that don’t exist unless we create them?
After pondering those questions for a moment and researching, I realized that we lack support within our community. I know, this is something no one wants to hear but it needs to be said. Seemingly in the past, we all wanted to stay in our corners and live life the best way we can. Unfortunately, this is impossible. As a community, our ignorance and the ignorance of others is costing us more than we are willing to pay. Our Warriors are staying longer in the hospital and enduring the labeling of others as drug seekers and addicts. They are suffering from a lack of adequate funding to provide better care for them. Recently, I found out that Sickle Cell is the #1 blood disorder in America but it is the least funded. Seriously, This should anger us to move in great ways; however, it only angers us to move in small steps and get mad at the other communities for their profound steps toward worldwide awareness.
For us to receive the support and recognition needed, we must stand up and be counted. Recently, I joined a Sickle Cell Support group. We had a break out session with the Caregivers. At this session, I met a young couple that had a 5-year-old daughter with Sickle Cell. It was their first time coming to the meeting and they had a lot of questions. They were surprised to know that they could not count on the Doctors to know everything for their daughter. They were equally surprised to hear that they would need to teach the doctors in some cases. With a puzzled look on their face, they were overwhelmed and I could tell. So, I volunteered to help them in any way I could. The next question is the one that I was most interested in answering. Why don’t we have the information we need? I said, “Lack of Support and Consistent participation.” I had been to several meetings at that point and every time I attended I met a new group of people. Very few people attended repeatedly. This was also the truth for another group I attended. As a result, the numbers were minimal, and it is more difficult to get support for a Community of Warriors that is not supported by its Warriors and Warrior Caregivers. With that statement, they vowed to attend the next meeting and I pray they can.
Nevertheless, Support and Consistency seems to be a common thread in all Communities that wish to be heard. As the Community with the #1 blood disorder, we should have no trouble rallying support. Our struggles should propel us to show up to every meeting, rally on the steps of every statehouse, and donate to help stop the pain of Sickle Cell.
-Mrs. Tamara Adams
A Warrior’s Caregiver!
@TAdams, Thank you for addressing these issues that sickle cell patient’s face withing the SC community. I have been battling this illness for as long as I can remember; one thing I know for sure is that we lack support, understanding of SC and most importantly, we lack medical care. So it’s really awesome that I came across this website.I reside in Orlando Florida,How can I start a support group in my area?
We are finding resouces here in Michigan. We have joined our local Sickle Cell of Michigan Org. and try to be involved with some of their activities. Also, through info. at Children’s Hospital my boys 5yrs (with sickle cell) and 8yrs (without sickle cell) have been able to join a free martial arts class through a cancer organization which allows sickle cell kids (because of the blood issue link) to join! It is teaching them breathing techniques to deal with pain without all the medication!But you really must READ and educate yourself on this disease!! I am in the process of writing a letter to the school discussing my son not having to go out for recess since winter is coming and i will attach information from this website to the letter. It will go to the principal, teacher and school nurse! You must take charge with this disease and not be victim. Be strong sickle cell warriors keep telling your stories, sharing your victories, and stuggles and most of loving each other!!! Be blessed!
Make laws protecting warriors!