We still Hope
For sickle cell awareness month this year, the cure sickle initiative launched a campaign on what a cure means to you. See the campaign here: https://curesickle.org/sickle-cell-awareness-month
Chime in below and add yours as well!
Added by Ade Dotun on September 15, 2023 at 10:35am — No Comments
The Women’s Health Clinical Research Center at Penn Medicine is currently recruiting participants with sickle cell disease for a paid study looking at whether participants experience any difference in their sickle cell pain while using a hormonal birth control implant as compared to when not using this birth control method. The implant, known as Nexplanon, is currently FDA approved, releases a small amount of hormone every day, and is the most effective form of hormonal…Continue
Added by Katie on June 16, 2023 at 3:58pm — No Comments
The ASCEND study is seeking individuals who are taking Oxbryta to participate in a 3 month, app based data collection study. Up to $125 in gift cards will be provided in return for participating.
Learn more at …Continue
Added by Ade Dotun on September 30, 2022 at 6:07pm — No Comments
The Sickle Cell Consortium and Cayenne Wellness Center host “The 3rd Annual 24 Hour Sickle Cell-a-thon Celebration: Sickle Cell Has No Color.” Today 12 AM EST to 11:59 PM EST. They will be sharing the many different ethnicities with sickle cell from around the world. If you have not had the chance to join us in the past years, you’re in for a treat. For 24 hours, we Live stream different talks, activities, speakers, games, and much more with different organizations from around the…Continue
Added by Ade Dotun on June 19, 2022 at 8:08pm — No Comments
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
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!…Continue
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.
My life has been characterized by tenacity, perseverance and determination; these values have been instilled in me through overcoming…Continue
Added by Ade Dotun on June 19, 2020 at 4:30pm — No Comments
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…Continue
Added by Ade Dotun on November 27, 2019 at 7:01pm — No Comments
Checkout sickle cell 101 latest podcast episode with me :)
Added by Ade Dotun on August 26, 2019 at 9:38pm — No Comments
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.
Please share what you are doing this month in honor of our month of the year!
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…Continue
Added by Ebony Ravenell on June 9, 2018 at 6:01am — No Comments
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…Continue
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…Continue
Added by Olajuwon Okubena on February 13, 2017 at 4:20pm — No Comments
Added by aeesha on November 21, 2016 at 4:30pm — No Comments
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:…
Added by Shep NIckel on August 28, 2016 at 1:24pm — No Comments
Hello Everyone! I am Jessica, a Simmons School of Nursing student. My colleagues and I are conducting some research this semester and need your 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…Continue
Added by Jessica on August 26, 2016 at 7:51am — No Comments