Living with Sickle Cell Disease | UNHEARD

[@shawnm8979]

Lost my brother in 2006 from SCD and I am now trying to raise awareness - thank you for sharing your story

[@Queenmikado_]

Hi please how do I reach you directly so we can discuss this

[@Jazmeyne]

Wheeeww. A friend of mine died from sickle cell and I could not even imagine everything that he was dealing with every day. Thank you for sharing these stories!

[@charliebrown5235]

🙏🏾I just lost my girlfriend 💔.I can't imagine her pain😩

[@sheilanamale6799]

Sorry 😞💓

[@nyctyrant967]

Looking at this video brought me to tears because I also struggle with SCD. it wasn’t until I was older that I started realizing the mental effect this disease has had on me. Every SCD patient has their own horror story of being in the hospital and it just amazes me how people can treat you so badly when you are at their mercy. It honestly makes me hate going to the hospital even to this day.

[@Minecraftmom86]

I’m just learning about this disease and I wish there were SCD patient advocate groups that could send an advocate to accompany patients to the hospital to ensure they are receiving appropriate care. There should be oversight boards to ensure proper pain management is being administered and response times for treatment should be noted. Do you have family that can advocate for you when you are in a crisis?

[@nyctyrant967]

@@Minecraftmom86 I do, I’ve gone to better hospitals where they have more compassion. This video just triggered me really in thinking how heavy those drugs can be and how people still try take advantage. I don’t go without having someone I trust there with me. Luckily my daughter doesn’t have it. I would never want her to go through what I’ve experecined.

[@theherlenereport8773]

The worse thing for me is the depression. I'm sick in bed and I'm in so much pain that I can barely breathe. Every breath radiates pain in my body. I'm sweating and I can't stay comfortable. My body's to hot, I'm sweating. I just want everything to just end. I just want God to put me out of my misery. I just want to give up and I have no motivation. I constantly have to go to the hospital and I can't always keep a job because I could be out for a week or two weeks. Even if my employers know of my illness, they can't just wait for me to get better. And that makes me feel so worthless. I stop taking my meds and the pain comes back and I end up in the hospital again. And it's just a cycle.😢

[@edsonnokanogueira8012]

Mind to share why you stop taking your meds?

[@2listening1]

I am so sorry. Blessings wishes to you.

[@ebegwendolyn9204]

I'm a parent to sickle cell kid please try plant stem cells and spirulina.You will thank God.For 2 yrs now no hospital no pains

[@graveyardkeeper777]

Google Dr. Charlie Ware. He has Sickle cell and he has created some good, natural products to combat Sickle Cell. Get rid of the processed foods and eat only natural foods/alkaline diet, along with using Dr. Ware's products or Dr. Sebi's products, (Banjul, Bio Ferro, Iron Plus, Viento and Bromide plus) and you will definitely see a difference.

[@AyubaOmotola]

How did you go about it please I need help ​@@ebegwendolyn9204

[@sisgrace2302]

“Is any among you afflicted? let him pray. Is any merry? let him sing psalms. Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: and the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.” James 5 13-16 Pray without ceasing. 1Thess 5:17

[@mikethebike2456]

🛵 It's ARE any among you ...

[@Ash2beauty]

@@mikethebike2456no it’s not. Read the Bible and stop trolling.

[@Angela-hm3xt]

I just saw something about sickle cell gene therapy. Please look into it. I pray for you. Thank you for being brave

[@glindadames-fincher2404]

Doctors are taught the basics of Sickle Cell Disease in med school. However, if they don't specialize in hematology/oncology nor see any SCD patients during residency training, then they may not know or remember proper treatment or diagnosis of complications. So some of them are looking on their phones or tablets because there are apps with SCD treatment guidelines. There are guidelines from NIH since 1984. ASH (American Society of Hematology) has an app, and ACEP (American College of Emergency Physicians) has guidelines and training slides online for SCD. So it can be a positive thing if they are consulting these online resources instead of pretending they know everything, because unless they are a hematologist, they may need to consult other physician resources to give you proper treatment.

[@Nursery72]

Thanks for the awareness

[@BronzeSista]

My friend from Kenya died at age 30 from sickle cell. I had to do research i didn't know anyone with it and i was 35 years old.

[@AsabeniIbro]

Sannu Zuhra.. Mama ne daga Nigeria..keep on making du'a,for innallaha ma assabiruun..from minna.

[@victoryabraham9937]

I'm sickle cell, and it's really telling on me in college😭, sometimes I feel like dropping out because the pain keeps coming , it's hard getting blood transfusion, when I go to the hospital,it's frustrating cause it's the same drip and pain relief process, I just hate my life rn

[@Ro-bt7ex]

@victoryabraham9937 Sending you so much love and light.

[@sheilanamale6799]

Keep moving dear 😘❤️ God 🙏 is going to help you out there.

[@otakuoveride2991]

I had to drop out. I know it’s easy for me to say but we have to find ways to combat this shit. Sending love encouragement and support. We got this

[@EnchantedAnn]

Please keep pressing forward with your education, you have gone far than a host of people with SCD I applaud you and am very proud of you dear🔆🔆🔆🔆

[@wekabrown418]

Keep going!!! I am 45 years YOUNG living with sickle cell anemia. I have a masters in education and have been teaching since 2006...I did have a major crisis in 2009 BUT God. Do your research and ask for support. You're amazing and you can do hard things.

[@annevanderlaan6441]

The biggest problem is they don’t believe me because I am light skinned.

[@sublimnl1]

You must have afrikan blood somewhere down the line then

[@annbigirwenkya5762]

Not necessarily. Your ancestors just have to have lived in areas where malaria was.

[@musicmakeup8481]

Gene editing is very worrying, we have a lot of damage from SC in the body. A lot of us have passed away immediately after bone marrow transplants because of the left over damage. 🤦🏽‍♀️🤦🏽‍♀️ I’m just very worried about it and pray that it helps one day. Plus yeah these ER doctors are insane, like he/she could have killed u with that 0.5 of morphine 🤦🏽‍♀️🤦🏽‍♀️🤦🏽‍♀️ acute chest!!!! I’m glad ur still alive hun.

[@lisamcgeachy-vu7qu]

Thi is so sad

[@sisgrace2302]

“And he said, I may not return with thee, nor go in with thee: neither will I eat bread nor DRINK WATER with thee in this place: 1 Kings‬ ‭13‬:‭ 16 And they found an Egyptian in the field, and brought him to David, and gave him bread, and he did eat; and they made him DRINK WATER;” 1 Samuel‬ ‭30‬:‭11‬ ‭ “So two or three cities wandered unto one city, to DRINK WATER; but they were not satisfied: yet have ye not returned unto me, saith the LORD.” Amos‬ ‭4‬:‭8‬ ‭

[@sisgrace2302]

“For I am not ashamed of the gospel of Christ: for it is the power of God unto salvation to every one that believeth; to the Jew first, and also to the Greek. For therein is the righteousness of God revealed from faith to faith: as it is written, The just shall live BY FAITH.” ‭‭Romans‬ ‭1‬:‭16‬-‭17‬ ‭