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The One-Oh-One  |  Mid-Year 2019

Can you believe we're already more than halfway through the year?! 😅
EDUCATION
    My Sickle Cell Story: How I Decided to Participate in A Study to Cure My SCD
    Expert Piece: A Report on the Guidelines for Pain Management in SCD
    Patient Perspective: Sickle Cell and Depression by David Woods

SICKLE CELL 101 HAPPENINGS
    Social Media Education
    Programs
        Current
        Grant Awards
        Launching Soon

Education
How I Decided to Participate in A Study to Cure My Sickle Cell Disease
“I turned down the opportunity to participate in a transplant study for sickle cell disease patients at first. I had mixed emotions about it––primarily fear. I knew that my health could become worse and that there was a possibility of death. But, being cured of sickle cell disease has always been a dream of mine, and participating in this clinical study let me play a small part in the overall goal for a cure. I weighed my options– either I would live the rest of my life with sickle cell disease and deal with the complications, or I would go through with the study and face the journey that lay ahead. ⠀⠀
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After I speaking with three patients who participated in the study before me, I said yes to the study. During the study, the effects of the chemo hit me the hardest…”⠀⠀
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Read more about Charles Hough’s experience in participating in a transplant study→


A Report on the Guidelines for Pain Management in Sickle Cell Disease
Keith Quirolo, MD

Under prescribing and undertreating pain for people who have sickle cell disease has been a problem for decades. “Psuedoaddiction” is the term used to describe people living with SCD who are undertreated for pain in the emergency room. Patients are given lower than was previously prescribed pain medication and denied adequate treatment. Pseudoaddiction also encompassed the sharing or giving pain medication to others who had sickle cell disease who were under prescribed, obtaining prescriptions from more than one provider, using then illicit drugs such as marijuana to treat pain.  To most physicians, these are all “red flags” that the person they are treating is addicted to pain medication. This is not the case for people who have SCD, it is due to the chronic undertreatment of pain by providers and to the disparity of medical care for people of color. 

Read more about pain management guidelines


Sickle Cell Disease and Depression

Do sickle cell and depression go hand-in-hand? This is just a thought. Have you ever felt like you were doing all that you could to stay healthy only to become ill and feel like you have to start from scratch again?

If you’ve ever felt this way, please know that you are not alone. Yes, it can be quite discouraging to actually be thriving as a student, worker, or even as just being a productive citizen, when here comes along a sickle cell crisis and puts you down for about a week or more.

It can be depressing and instantaneously discourage you from your hopes and dreams. What can you do if you think you may suffer from depression?


Read more about sickle cell disease and depression

Sickle Cell 101 Happenings
SOCIAL MEDIA EDUCATION

Did you catch these posts on our social media pages?
Top-performing post on Instagram and Facebook.
Top-performing post on Instagram and Facebook.

Be sure to follow our Spanish page Sickle Cell 101 Español, and to stay updated on sickle cell happenings– a bulletin board for the sickle cell community, follow Sickle Cell Plus.
Sickle Cell 101 Español: Sickle cell education in Spanish.
Sickle Cell Plus: A bulletin board for the sickle cell community.

Ask Dr. Q Live
Live interactive sessions were viewers and followers can send in their sickle cell related questions to our sickle cell expert physician, Dr. Keith Quirolo. Stay tuned, videos of these sessions will be uploaded on YouTube later this year.

Tune in! Ask Dr. Q Live sessions are hosted the first Monday of each month!

If you're not already, please follow all of our social media pages below:
Instagram
Facebook
Twitter
Website
Sickle Cell 101's Cassandra Trimnell and Ada Gonzalez at the
2019 Hemoglobinopathy Counselor Training Course hosted by Cinncinati Children's Hospital.

COMMUNITY OUTREACH

Within the last few months, Sickle Cell 101 has guest lectured at Stanford University and Rutgers University and presented on sickle trait and clinical studies at the 6th Annual Sickle Cell Patient and Family Symposium.
 
Standford University
Keith Quirolo, MD, Angela Ehrlich, MA, and Cassandra Trimnell guest lectured at Stanford's pre-med program.
Rutgers University
Stephen Boateng, PharmD, RPh lectured at Rutger's healthcare professionals at a continuing education event.

Historic Sickle Cell Disease Legislative Briefing
Sickle Cell 101 participated at the California Legislative Briefing on Sickle Cell Disease with Dr. Keith Quirolo and Cassandra Trimnell as presenters.

Sickle Cell Smarts Literature
Sickle Cell 101 supported sickle cell educational events by partnering with patient advocacy groups, Carol's Promise Sickle Cell Foundation and Sickle Cell Houston.

PROGRAMS

ADDITIONAL CURRENT PROGRAMS

The Sickle Cell Podcast: Sickle cell according to us! Listen to our educational and engaging podcast that features relevant topics and leaders within the sickle cell community. Find wherever you get your podcasts!

Sickle Cell Advocate of the Year Awards: Congratulations to our 6th Annual Sickle Cell Advocates of the Year award recipients! Our esteemed judging panel selected the following SCAY winners:
GRANT AWARDS

Novartis STEP Program: FACTSS
Sickle Cell 101 is honored to be selected as an award recipient of Novartis's STEP Program for our FACTSS Program

PCORI: CaRISMA
Sickle Cell 101 is excited to be partnered with PCORI award recipient, University of Pittsburgh on CaRISMA.


LAUNCHING SOON

SCD Studies: An educational resource platform dedicated to helping individuals with sickle cell finding and participating in clinical studies that are right for them.

Sicklepedia: An online patient-friendly encyclopedia dedicated to sickle cell.

SPONSORED PARTNER INITIATIVES

Sickle Cell 101 is a proud partner of Generation S and #SickleCellSpeaks.
Are you registered for the 2019 Sickle Cell Disease Therapeutics Conference? It's not too late! Head over to scdconference.com to register to attend this event in Washington DC on September 10th.

THANK YOU– Testimonials 

We'd like to thank you for your kind words and support for our content! Here are some of our favorite social media testimonials for 2019!
 








We couldn’t continue to do what we do without the support of our amazing team #TeamSickleCell101 and a huge thank you to our 2019 sponsors!

2019 Sponsors





 





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Copyright © 2019 Sickle Cell 101, All rights reserved.


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