Monthly Archives: October 2021

SCDAA News Advisory: Salmonella and Sickle Cell Disease

Over the past few months, more than 1,000 people in the U.S.A. and Canada were infected with a bacteria called Salmonella. The Centers for Disease Control and Prevention investigation can be read here.

“… red onions from Thomson International Inc., were the likely source of the outbreak. Other onion types (such as white, yellow, or sweet yellow) were also likely to be contaminated because the onions were grown and harvested together… On August 1, 2020, Thomson International Inc., recalled all red, yellow, white, and sweet yellow onions because they may be contaminated with Salmonella. Other companies also recalled onions or foods made with recalled onions. Consumers, restaurants, and retailers should not eat, serve, or sell recalled onions and products.”

Here is the Thomson International Inc. recall notice.

Here is the list of recalled products made with onions.

What is Salmonella infection?

Salmonella is a group of bacteria with many different types. The type responsible for most infections in humans is carried by chickens, cows, pigs, and pet reptiles (turtles, lizards, and iguanas). Most infections with Salmonella spread to people through contaminated food such as meat, eggs, and vegetables.

Why mention this now?

Salmonella can cause special problems in individuals with sickle cell disease and thalassemia: bone infection (osteomyelitis) or joint infection (septic arthritis) to include:

  • Diarrhea, especially bloody diarrhea
  • Fever for many days
  • Prolonged pain in a bone or joint
  • Can be multiple sites, often symmetrical
  • Redness and swelling at the site of pain
  • Treatment might require bone biopsy, weeks of antibiotics, and sometimes surgery

Why does this happen in sickle cell disease?

Most likely 3 reasons:

  1. Sickle cell damage to the cells lining the gut allows Salmonella to enter the bloodstream more easily.
  2. Sickle cell disease reduces the immune system’s ability to clear bacteria from the bloodstream.
  3. The expanded bone marrow, due to high production of red cells and bone marrow sites damaged by lack of oxygen, are places where Salmonella bacteria can hide and grow.

Salmonella contamination is linked to poor sanitation.

What you can do

  • If your household has onions or products with onions purchased in the summer, check whether they are on the recall list.
  • If you have fevers and diarrhea, see your doctor promptly.
  • If you have bone pain or joint pain with features different from your usual sickle cell pains (redness, swelling, lasting a long time, unusual site), see your doctor.
  • Use good food-handling practices for meat, eggs, and vegetables.
  • Cook food properly at recommended temperatures.
  • Avoid touching pet reptiles.
  • Avoid street food that may involve dishes made with raw onions.

 

A Word From Our Sponsor: bluebird bio

Thank you to bluebird bio for their generous support of our 49th Annual National Convention!

How can you help to spark change in Sickle Cell Disease (SCD)? By staying proactive in sickle cell care and planning for the future. Be the Spark, a platform for education and information brought to you by bluebird bio, was created in collaboration with advocacy organizations to drive change in sickle cell. bluebird bio believes that achieving change in sickle cell starts with listening, making no assumptions, and amplifying the voices of people who are already working tirelessly to make a difference. bluebird bio is committed to supporting the sickle cell community and strives every day to help sickle cell gain the recognition it deserves. Visit SparkSickleCellChange.com to build on your sickle cell knowledge and learn how you can spark the conversation for change!

This information and the content on SparkSickleCellChange.com is not intended to replace discussions with your healthcare provider. Please discuss any questions with a US healthcare professional.

Learn more about bluebird bio at: www.bluebirdbio.com  

SCDAA launches clinical trial finder

HANOVER, Md.—The Sickle Cell Disease Association of America launched a sickle cell disease clinical trial finder, a centralized, simple-to-navigate website to help people with sickle cell disease, their families and caregivers find clinical trials.

Clinical trials help pharmaceutical companies collect data about the effectiveness and safety of sickle cell disease treatments and can provide participants with new treatments before they become widely available. Participants can use the clinical trial finder website to search for trials by keyword, location, study type and phase, now listed in one place.

“Until now, people with sickle cell disease had to search far and wide to find clinical trials,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “The clinical trial finder provides a one-stop shop for patients and their families to discover, learn about and connect with trials that are critical to discovering therapies and treatments for sickle cell disease.”
 

SCDAA holds 49th annual national convention virtually

The Sickle Cell Disease Association of America will hold its 49th annual national convention virtually this year from Tuesday, Oct. 12, through Saturday, Oct. 16. The five-day multidisciplinary convention addressing sickle cell disease and sickle cell trait draws hundreds of health care professionals, patients, families, community-based organizations, leaders and advocates.

“Our lineup of world-class speakers will present innovative and current best practice strategies and inspire and challenge our thinking about management and care and the latest scientific and clinical information about sickle cell disease,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “There’s something for everyone at our convention this year.”

The keynote and honor lectures will be delivered by:

  • Kim Smith-Whitley is executive vice president and head of research and development at Global Blood Therapeutics, and Teonna Woolford is founder and CEO of The Sickle Cell Reproductive Health Education Directive. Woolford lives with sickle cell anemia. Smith-Whitley and Woolford will present the Charles F. Whitten, M.D., Memorial Lecture: “Sickle Cell and Access to Reproductive Health Services: An Advocate’s Perspective.”
  • Gary H. Gibbons directs the National Heart, Lung and Blood Institute at the National Institutes of Health. Gibbons will present the Clarice D. Reid, M.D., Lecture: “Accelerating Innovative Treatments for Sickle Cell Disease.”

Additional convention events include business and grant meetings, exhibit hall presentations, advocacy lectures, clinical trial updates, educational workshops, medical reports, panel discussions, award presentations and social events. Participants will have the opportunity to connect and interact virtually with health care leaders and professionals and gain new relationships, knowledge and resources.

To learn more, see the convention program or register, visit www.sicklecelldisease.org/get-involved/events/annual-national-convention.
 

MARAC Advisory Statement Update About COVID-19 Vaccines

September 24, 2021 — News about COVID-19 continues to move quickly as we weather the pandemic. The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee provides the following updates on vaccination recommendations:

1. Individuals with SCD are now eligible for the third dose of the COVID-19 vaccine. The CDC recommends that people who are immunocompromised or have medical conditions with poor antibody production receive vaccine boosters. One of the eligible conditions is asplenia (no spleen function). Because of the relationship between asplenia and SCD, sickle cell patients are eligible to receive a third dose of the vaccine if they have already received the first two doses.

2. If you have not had the first dose of the vaccine, please do so as soon as possible. Nearly everybody is eligible to receive their first shot. Only children under age 12 or individuals with known allergies to the vaccine ingredients are ineligible. Thousands of individuals with SCD have now had the COVID-19 vaccine. Like the public, many had some side effects that went away after three days. Only a tiny number of individuals experienced sickle cell pain after their shot. A COVID-19 infection poses a great risk for people with SCD. The vaccine is a safe way to reduce that risk. To find a vaccine location near you, visit www.vaccines.gov.

To view a full list of MARAC members and to download this statement, click here.