Sickle Cell Partners of the Carolinas has a great opportunity to engage the teen community here in Charlotte. A new app is being developed for patients to judge their sickle cell pain and they will be paid $50 for giving their opinions. A small group is needed and for some reason, many are slow to respond. We hear over and over again how nothing is done for this patient population or one reason or another why patients and families don’t want to talk about their condition or “tell their business.” Really? I mean… really?! We must do away with this school of thought. It gets the sickle cell population absolutely nowhere and guess what, our children end up living out the same vicious cycle that many sickle cell patients have been through over the years. This is an opportunity to make a change, however small, in regards to sickle cell disease.
SCPOC would like to see teen patients sign up for this focus group but it goes beyond that. We must continue constructive dialog about sickle cell disease. We must get involved, educate others and advocate for cure options and better treatment of this condition. Several days in the hospital and narcotics only ease the situation until the next time when you’re back for guess what… more narcotics.
So, decide today to make a small step and get your young one involved in having a voice. All of those apps on your phone can now include one for your child to tell you how bad they are really feeling. The focus group needs a few teens and the deadline of April 25th is rapidly approaching. Reach out to firstname.lastname@example.org or call 877-730-0852 option 6. The focus group take place Saturday, April 29th from 10 am to noon at Friendship Missionary Baptist Church in Charlotte.
Want to continue this conversation on awareness, advocacy and education? Let’s do that at our conference, “Sickle Cell Disease…. Let’s Talk About It” on Saturday, September 9, 2017 in Charlotte. Stay tuned to this blog for more updates on that.