Sickle Cell Awareness 365
Transition Focus Group

Saturday, May 20, 2023
Virtual Event, 1 pm–3 pm EST

Are you a parent of a Sickle Cell Warrior? Are you a Sickle Cell Warrior between the ages of 13–23? We want to hear from you on how we can help our young Warriors transition into adulthood.

This focus group is to understand the needs and wants of Warriors and their caregivers as they transition from pediatric care to not only the adult healthcare system but learning how to adult with Sickle Cell Disease as a whole. We are a unique group of people and cannot move in the ways that our peers can. We want younger Warriors to understand that it is entirely okay to dance to the beat of your own drum and embrace your uniqueness for the betterment of yourself.

You have a chance to win a $25 gift card for your participation.

More info:
info@sca365inc.org
770-376-7242

Roland B. Scott Symposium on Sickle Cell Disease

"I Want Somebody to Love"

Friday, May 19, 2023

Live and Virtual Event, 10 am –3 pm
W. Lester Henry Auditorium
Howard University Hospital

This event will explore stigma, relationships and reproductive issues for those living with sickle cell disease. It will include two panels and a town hall, as well as awards and memorials. 

Speakers include Teonna Woolford and Ahmar U. Zaidi, MD.

July 18-20 | Boston, Massachusetts

This conference focuses on building end-to-end support for patients with rare diseases. SCDAA President and CEO Regina Hartfield will participate on a panel about increasing diversity, equity and inclusion in clinical trials. Patients, caregivers and patient advocates are welcome. Register by May 26 to receive a discount.

• Event: Oncofertility Webinar
• Date: May 2, 2023
• Time (Zone): 2:30 pm EST (Eastern Time, US and Canada)
• Duration: 1 hour
• Organizers: Surgery, Practice & Non-Oncological Conditions Committees
• Topic: Fertility Preservation in Patients with Sickle Cell Disease (SCD)
• Speakers: Rebecca Flyckt, Mindy Christianson & Lydia Pecker (USA)
• Link: Zoom Meeting (Passcode: 219754)

April 13, 2023 - SCDAA’s Medical and Research Advisory Committee is still receiving reports of intermittent shortages of penicillin VK liquid. Below is a slight update to the statement released on this topic in January.

Soul Session is a weekly mental health and wellness initiative aimed at fostering a supportive community. Every Thursday at 7:00 PM Eastern, attendees gather on the Sickle Cell Community Consortium Facebook page for breathing exercises, conversations and mental health check-ins. By prioritizing self-care, Soul Session helps individuals keep their week on a positive note, promoting overall health and wellness.

Sickle cell disease (SCD) complicates reproductive health for affected individuals. Girls and women with SCD confront challenges associated with menstruation, contraception, infertility risks, and high-risk pregnancy. This workshop assumes a lifespan approach to reproductive health in people with ovaries and sickle cell disease and engages questions related to pathophysiology, clinical care, and structural disparities that need to be addressed to fulfill the promise of high quality, individualized, comprehensive care for girls and women with SCD.

During the workshop’s first day, the major themes will be ovarian reserve, menstruation, and contraception. The first session will address the reproductive lifespan and accelerated decline of ovarian reserve as it may have devastating consequences including miscarriage, infertility, and early menopause. The extent to which we know whether or not and how SCD treatments and cures exacerbate these risks will be addressed. As gene therapy trials continue and FDA approval may be near, fertility preservation is a growing concern for the SCD community as existing preparative regimens are gonadotoxic. In the “Reproductive Lifespan & Fertility Preservation in SCD” session, the focus is on highlighting the lack of our understanding the pathophysiology of ovarian reserve decline and to implement access to cryo-tissue preservation early. Other interventions such as genetic counseling and assisted reproductive technologies will also be addressed.

We're excited to share the first article in our new CMO Speaks blog! Join us as members of SCDAA's clinical leadership team share their thoughts on hot topics in the SCD community. In this issue, SCDAA Chief Medical Officer Dr. Lewis Hsu discusses fertility care and SCD with input from Dr. Lydia Pecker.

NPR recently produced this segment with sickle cell warrior and advocate Teonna Woolford on fertility care and SCD. This is an underdiscussed topic and an important aspect of sickle cell care. We congratulate Teonna and the Sickle Cell Reproductive Health Education Directive (SC RED) for getting this message out, and we are grateful for the attention from NPR.

The Sickle Cell Disease Association of America, Inc., joins the Foundation for Sickle Cell Disease Research (FSCDR) in condemning the use of sickle cell disease (SCD) as a punchline on the HBO Max show Velma. For the over 100,000 Americans impacted by sickle cell and their families, this disease is anything but a laughing matter. Stereotypes and misinformation reinforced by media clips such as this have real-life consequences.

Sickle cell patients struggle to be taken seriously and receive proper care, even when they present with life-threatening symptoms in the emergency room. As we work to change the perception of sickle cell and increase education surrounding this condition, insensitive and inappropriate jokes like these work against progress and contribute to the spread of misinformation. We must do better and encourage people to treat rare diseases with the respect they are due. #SickleCellIsNotAJoke

Penicillin VK solution is suffering from intermittent supply shortages. This can affect children with sickle cell disease. Penicillin VK in liquid form is prescribed for babies and young children with sickle cell disease who are unable to swallow pills as standard care, twice a day, starting as early as 6-8 weeks of age. Children less than 3 years of age should receive oral penicillin 125 mg twice daily, and the dose should be increased to 250 mg twice daily for children older than 3 years.