Sickle Cell CONSTANTLY Getting Disrespected
As sickle cell warriors are you constantly getting disrespected whenever you go to the hospital or the doctor or if you get weekly treatment? Your pain not getting taking seriously, being denied your medication or getting your refills because you were hospitalized, you’re in the hospital and you are constantly telling the doctor you not ready to go but you getting kicked out anyway, and the list goes on and on unfortunately.
Aww, thank you for your kind words. They are very much appreciated! Yes it very much does feel like I am not making a difference or it’s doing much, but you are not the only one that has not said that. So I very much appreciate that. And thank you for those links that you sent. I will definitely check them out. And of course I’ll keep you updated on the great things I’m TRYING to make happen. Right now I’m at a stand still because I don’t know an artist or a production company or to how or who to pitch these great things. Do you happen to know where and how I could submit this information too? If not no biggie, but doesn’t hurt to ask. 🙂 
I wish I had some insight or contacts to share but sadly, I do not. I believe the more you get out there in the public eye and advocate more, you'll cross paths with the right people, and someday soon, I'll see your ideas come to life, and I'll think to myself, "I heard about this before 😀"
I am linking information on one of our Patient Advocates, Wunmi. She speaks and shares a lot about her role as an advocate; I think you'll enjoy reading more about her, and it may help you find your way to accomplishing all the things you've shared!
Don't forget about us over here at SickleCell.com! I can't wait to hear/see all you do! Sending positive vibes your way! -Beth (Team MembeR)
https://sickle-cell.com/community/community-advocates/wunmi-bakare
Are these things you're experiencing? -Beth (Team Member) Again thank you so very much for your support and concern. Yes this is something we constantly have to deal with. What I’m doing is advocating for myself and I confide in my nurses about this and even though they say I am doing the right thing it doesn’t feel like it’s enough or doing anything because nothing has change. I am also trying to do more to raise more awareness and even though September is Sickle Cell Awareness Month trying to raise more awareness for it EACH and every month. I’m trying to get a sickle cell doll or stuffed animal made with accessories and such and have the concept for the doll made up but I am not an artist so I don’t have her drawn and I have pitched it to toy companies but unfortunately they keep passing on it. I also want to have a reality show or show showing the life of having sickle cell where a camera would follow me and see how I’m constantly in and out of the hospital, constantly going to doctors appointments and treatments all trying to live a “normal” life working, going to school etc but don’t know where to pitch it. As said before I’m trying and advocating but doesn’t seem like it’s doing much and this disease is CONSTANTLY getting disrespected. ENOUGH is ENOUGH! , I think all you're doing, and planning is amazing. Keep rocking on; the world needs more people like you! Being an advocate isn't easy, but you sound like the right person for the job. And although I'm sure it's frustrating at times to think you're not making a difference, please don't believe those thoughts! I found a few articles about advocating for SCD and wanted to share them with you. Please know we're always here if you ever need to talk! If you're up to it, please keep us posted on how you're doing and all the great things you accomplish to bring more awareness to SCD. Sending you hugs and well wishes for all you do! -Beth (Team Member)
https://sickle-cell.com/living/advocate-struggles
https://sickle-cell.com/living/becoming-an-advocate
https://sickle-cell.com/living/advocacy-activism
