Sickle Cell Disease Insights

Specialty pharmacies: a guide for sickle cell patients & carers

February 06, 2025 • Estimated Reading Time: 1 minute

Exclusive Report

Specialty pharmacies: a guide for sickle cell patients & carers

Exciting breakthroughs in rare disease treatments mean more patients are gaining access to cutting-edge therapies - and specialty pharmacies are playing a crucial role in delivering these medications with expert support. But what exactly do they do, and when do they come into play?

AllMyHealth’s latest guide breaks it all down - exploring how specialty pharmacies work, their expanding role in patient care, and how individuals can engage with them. Plus, we spotlight some specialty pharmacies that cater to sickle cell.

Available in both text and audio formats - dive in today and share with your community!

View the Full Report

The report is available for free online on the AllMyHealth website.

www.allmyhealth.io/reports

Latest Research

The study by Weeks et al. (2025) challenges the notion that sickle cell trait (SCT) can cause "sickle cell crisis" leading to exertion-related deaths. The research systematically reviewed cases where individuals with SCT, who are carriers for sickle cell disease, were reported to have died from a sickle cell crisis during physical exertion. This is a significant distinction because while sickle cell disease can lead to severe health complications, SCT is generally considered to have a lifespan similar to the general population.

The findings suggest that attributing exertion-related deaths to sickle cell crisis in individuals with SCT may not be accurate. Weeks et al. emphasize the importance of this distinction, as it has implications for the understanding of risks associated with SCT and the management of individuals with this trait during physical activities. The study calls for a careful evaluation of such cases to ensure that the cause of death is correctly identified.

Community News

Global Alliance of Sickle Cell Disease OrganizationsFeb 03, 2025

People with Sickle Cell Disease (SCD) often face misconceptions about their condition.

Here are 12 things they want you to know:

1. Sickle Cell is Not Contagious

2. The Pain is Real and Severe

3. Fatigue is a Daily Struggle

4. We Are Not Drug Seekers

5. Cold and Dehydration Can Trigger a Crisis

6. There’s No Universal Cure

7. We Need More Awareness and Research

8. Mental Health Matters Too

9. We Can Live Full Lives with the Right Support

10. Routine Medical Care is Essential

11. Blood Donations Save Lives

12. Empathy Goes a Long Way

Sickle Cell Disease FoundationFeb 03, 2025

A new study shows that individuals living with sickle cell disease exhibit brain aging 14 years earlier than their actual age, even without stroke history, and socioeconomic factors also contribute.

Read more here.

https://tinyurl.com/3uhfjw7d