All Blog Posts (288)

Sickle Cell Studies in Miami, Florida

Currently, there are a few different clinical studies for sickle cell disease. Must live in South Florida. To prequalify or to receive more info go to https://sicklecellresearch.com 

Added by Rachel Geiger on May 12, 2021 at 1:49pm — No Comments

Launch of new research platform for world sickle cell day!

AllStripes is transforming how families are involved in development of new treatments. They make it easy for patients and caregivers to contribute their de-identified medical records to advance research from home, at no cost. They just added sickle cell disease to their platform and are excited to have the community join the movement! You can accelerate drug development in Sickle cell disease, your experience with…

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Added by Ade Dotun on May 10, 2021 at 9:00pm — 1 Comment

Sickle cell awareness month 2020!

Happy sickle cell awareness month Fam! Hope you are all doing well and doing something to help raise awareness this month of September. I did a video collab with the SAMI organization on confidence below, let me know you know your thoughts and what are some things that has helped you to build confidence in your journey so far? Look out for another podcast collab coming soon before the end of the month as well! Stay blessed!…

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Added by Ade Dotun on September 8, 2020 at 5:18pm — 1 Comment

Happy world sickle cell day 2020!

For world sickle cell day this year, I wrote a blog about tapping into your warrior mentality, check it out and my tweet in the links below.

Tapping Into the Warrior Mentality

My life has been characterized by tenacity, perseverance and determination; these values have been instilled in me through overcoming…

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Added by Ade Dotun on June 19, 2020 at 4:30pm — No Comments

Birthday wishes

Thanks Ade

Added by Teela Mae on March 31, 2020 at 2:30pm — No Comments

FDA approves voxelotor for sickle cell disease

On November 25, 2019, the Food and Drug Administration granted accelerated approval to voxelotor (Oxbryta, Global Blood Therapeutics) for adults and pediatric patients 12 years of age and older with sickle cell disease.

The primary efficacy outcome measure was Hb response rate defined as an Hb increase of >1 g/dL from baseline to week 24. The response rate for voxelotor was 51.1% (46/90) compared to 6.5% (6/92) in the placebo group (p<0.0001). Additional efficacy…

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Added by Ade Dotun on November 27, 2019 at 7:01pm — No Comments

The Sickle Cell Podcast Feat. Ade

Checkout sickle cell 101 latest podcast episode with me :)

https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5

Added by Ade Dotun on August 26, 2019 at 9:38pm — No Comments

Could gene therapy cure sickle cell anemia?

Hey Fam,

Its been a while, hope you are all well! I just wanted to share this recent successful potential future cure for those who have not heard about it yet. It was featured on CBS 60 minutes and promising as a potential cure in the future.

https://www.cbsnews.com/news/could-gene-therapy-cure-sickle-cell-anemia-60-minutes/

Stay…

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Added by Ade Dotun on March 19, 2019 at 9:53am — 2 Comments

How does jadenu affect you ??

Hey guys I’m taking this medication called jadenu. it’s a new iron medicine I’m taking instead of exjade. I really just want know if anyone else is taking this and how does it affect you. I recently started taking it and ended up in the e.r. For a crisis. Did this happen to anybody else ?

Added by Henry Robledo on October 10, 2018 at 8:56pm — 4 Comments

Sickle cell awareness month 2018

Please share what you are doing this month in honor of our month of the year!

Added by Ade Dotun on September 20, 2018 at 11:43am — 1 Comment

I just want to work

So Recently I was back in the hospital for many reasons, my main reason being my hemoglobin was at 4.2 the lowest i've ever been. I was so afraid of going back to the ER and being judged that I just stayed home no matter what, while my levels dropped I kept passing out anywhere, even in the middle of conversations with family and friends. I also couldn't remember anything and became extremely confused about things I knew like my brothers birthday, when I called him to wish him a happy…

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Added by Ebony Ravenell on June 9, 2018 at 6:01am — No Comments

Why must we be treated like criminals or addicts?

I don't know about you guys but I am pretty fed up with hospitals and doctors. One minute they are telling me they believe my pain is real and other times they are telling me its all in my mind. I have had my kidney since 2015, before my kidney my pain was manageable because I was on things like Ibuprofen. But now since I have a new Kidney (Thank you daddy!) I can't have many things, so right after surgery they put me on Dilaudid but now 3 years later your telling me its my fault im on these…

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Added by Ebony Ravenell on April 26, 2018 at 12:20am — 5 Comments

Jobelyn, Sorghum-based Traditional Herbal Remedy for treatment of Sickle Cell Anaemia disease scientifically validated

For centuries, the people of South Western Nigeria had been using the herbal water extract from a special specie of Sorghum bicolor to treat people suffering from sickle cell disease. To scientists, it was a bogus and wild claim because the disease is believed to be complicated and difficult for the scientists to cope with. They tend to forget that nature has simple ways of handling complicated problems. At Health Forever, we have been diligently working to unravel the mystery behind the…

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Added by Olajuwon Okubena on February 13, 2017 at 4:20pm — No Comments

MY BIGGEST FEAR...

http://wikikolia.blogspot.com/2016/11/my-biggest-fear.html

Added by aeesha on November 21, 2016 at 4:30pm — No Comments

Sickle Warriors Team at Children's National Fundraising Event

Live in the DC area?  Please consider joining our SICKLE WARRIORS team to raise funds for the sickle cell disease program at Children's National. 

The 5K run/walk Race For Every Child event is October 1, 2016.  Even if you can't come to the event please forward the below link to others to help rally support:…



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Added by Shep NIckel on August 28, 2016 at 1:24pm — No Comments

Sickle Cell Research Survey for Students of Simmons College School of Nursing

Hello Everyone! I am Jessica, a Simmons School of Nursing student. My colleagues and I are conducting some research this semester and need your help.We have developed a ten-item questionnaire via survey monkey. Responses to this survey will help healthcare professionals better understand the needs of patients with sickle cell. Our project goal is to gain the perspectives of those diagnosed with sickle cell anemia on how they feel…

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Added by Jessica on August 26, 2016 at 7:51am — No Comments

Sickle Cell Research Survey from Students of Simmons College School of Nursing

Hello Everyone! I am Jessica, a Simmons School of Nursing student. My colleagues and I are conducting some research this semester and need your help.We have developed a ten-item questionnaire via survey monkey. Responses to this survey will help healthcare professionals better understand the needs of patients with sickle cell. Our project goal is to gain the perspectives of those diagnosed with sickle cell anemia on how they feel their pain is adequately treated, and what we as health care…

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Added by Jessica on August 24, 2016 at 12:00pm — No Comments

Sickle Cell Research: Need Support

Dear Members,

The students of the Sobey School of Business , Halifax , Canada are doing some research into the issues which affect those afflicted by Sickle Cell Disease (SCD), with particular relation to crisis situations. We are currently developing an innovation geared toward increasing the quality of life of those living with SCD and their affected families by using predictive technology. 



It is for this reason that we seek potential customer…

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Added by Shiv on June 26, 2016 at 11:17am — 2 Comments

Market Research for UK

for

Hey Everyone, 

We are doing a Paid Market Research in the UK we would like to get as many patients as possible, to take part in our one hour telephone discussion, I know one hour seems a long time but you can let me know if this is too long as i understand you may have some discomfort being on the phone for this amount of time so we could potentially split this up in to different parts, we would like to create a (PRO) this is a Patient Recorded Outcomes the reason…

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Added by Jonathan Daniels on May 19, 2016 at 9:30am — 9 Comments

INCESSANT PAIN

Hi warriors, I had one of the worst crisis Nov last year and was hospitalised for about a month, ever since I've been experiencing constant pain in most of my joints. I take Pentazocine injection almost every other day just to be able to go to work. I have tried different home therapies but no diff, feeling depressed now and at a low point, any advice on other drugs or therapy I could try? Scared of dependence on Pent. I am getting married later this year but really scared.

P.S I live in… Continue

Added by Sustain on April 18, 2016 at 4:45pm — 3 Comments

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