Blog #5

Tiffany Pang

2/23/20

 

1. List ten things that make you feel human.
   1. The ability to feel emotions
   2. Empathy
   3. Art of sharing
   4. Interacting with others
   5. Experiencing all types of flavors of food
   6. The ability to express my emotions into a form of art (piano, violin, painting, drawing)
   7. The feeling of breathing 
      1. Nothing feels better than taking a long breath of fresh air after a long day
   8. Taking in the beauty of mother nature
   9. Placing sentimental value on something or someone
   10. The fact that I am not perfect and so is everybody else
2. Articulate your philosophy of engagement as it pertains to your work with GSIF
   1. Specifically, discuss:
      1. Why should I engage?
      2. How must I engage?
      3. With whom must I engage?
      4. What kinds of challenges, opportunities and approaches should I care about?

In order to make a change, we all have a rather general desire to ‘save the people’. Yet there is an alternative approach or a particular way to engage. It is not about making changes, but about implementing. Our long-term goals include lowering the child mortality rate, providing accessible/affordable sickle cell diagnosis, spreading awareness of the effects of sickle cell anemia and improving the life quality for sickle cell patients. Yet, what determines these factors will depend on strengthening the communities’ attitudes towards the idea of diagnosing sickle cell anemia. The success of this project will not be labeled by the completion of the diagnostic device, but through building systems and promoting sustainable development in the Sierra Leone communities, to establish the needs of the present without having to compromise the ability of future generations to maintain their own needs. A sustainable community is one that encompasses a healthy environment, a flourishing economy, and a bustling civic life persisting over generations. To do so, the Sierra Leone community will learn to acknowledge the health issues interrelated with sickle cell, recognize the significance of being diagnosed, understand where they could receive immediate treatment if tested positive of the sickle cell trait, foster partnerships with medical stakeholders together with citizen participation and ultimately promote improving community well-being and the overall quality of life. And that’s where the impact begins.

The team has built partnerships and connections with World Hope International, Sickle Cell Care Awareness Network, Sickle Cell Society located in Sierra Leone and Lehigh Valley Hospital in Bethlehem, PA to receive feedback from medical experts on the operational aspects of the device, and learn how to address implementation challenges. This will include conducting interviews with local healthcare workers, and community members to assure the diagnostic device design is appropriate. Current diagnostic methods also use high-performance lab-based technology, which requires large amounts of electricity supply and heavy resources. These tests are not possible for many low and middle-income countries because of the usage of high-performance lab-based technology, which requires large amounts of electricity supply and other resources of similar trained personnel. By considering these context-specific frameworks for the diagnostic device, together with integrating the Sierra Leone local’s knowledge to guarantee a functioning device, these factors will indicate an overall validation of our project. In addition, an educational program will need to be established in collaboration with local partners to assist Sierra Leone communities. The local people will be informed of the significance of being diagnosed, understand where and how to receive treatment, consider genetic counseling and be conscious of how the symptoms of SCD present themselves. The team will be traveling to Sierra Leone in the summer of 2020 to pursue the development of the diagnostic device and will run a small clinical trial for approximately 10 individuals who are diagnosed with SCD. While in-country, the team will also discuss implementation of the device along with treatment and educational programs with partners in Sierra Leone.

Although this disease is widespread, the general population of Sierra Leone has no recognition of it, causing SCD to become a neglected problem. The reason for this is due to the limited information on the disease that has been published from the country. In terms of culture, ethnic diversity and frequency of the trait in specific regions serves as one significant indicator of understanding the clinical factors behind SCD because certain ethnic groups retain distinguishing sickle gene carriers. For future implications, it would be important to study the gene frequencies and disease burden in multiple Sierra Leone districts in order to establish priorities for providing services. What ties along with this is also understanding what the locals of these districts’ preferences and outlook on the entire medical provision are. In the provider’s eyes, we are giving service to help their communities battle SCD, but what do they think about this whole process is what determines if this service will be accepted or not.

1. 1. 1. What might my epitaph read?

In loving memory of 

Tiffany XJ Pang

“Don’t cry because it’s over. Smile because it happened.”

-Dr. Seuss