About
Project SYSTEM Operation CURE UP!

Project SYSTEM is a collection of data through sickle cell patient surveys and interview questionnaires to present to doctors sufficient real-time medical data on what is working and what can improve in the Sickle Cell Community.

 

The Operation CURE UP! initiative in collaboration with Project SYSTEM looks at data through the lens of the Sickle Cell patient and or caregivers and gives honest feedback to the medical industry. 

Triggers and Trauma Informed Care

The vicarious trauma enduring Sickle Cell Disease should hone in on the complexities of individuals living with Sickle Cell Anemia Disease and caregivers of those with SCD. Case studies such as Project SYSTEM essentially identifies a research gap in a Sickle Cell Population trend in data.

 

Top Concerns from Sickle Cell Warriors and CareGivers:

  1. Patient Care during Emergency Room Visits

  2. Medical Routines and concerns of disorganization of the medical treatment of Sickle Cell Disease

  3. Pharmaceutical Treatment concerns of introduction of FDA approved new medication and clinical guidelines

  4. The weight of livelihood balancing caregiver's mental and physical lifestyle and relationships with others

  5. Ineffective communication and timing between integrative care referrals

  6. Misguided information and not enough concise, proper training or educational background of SCD in emergency rooms, hospitals, medical facilities, and clinics

  7. Misdiagnosis speaks to rhetorical unrelated assessments which results in unnecessary billing

  8. Supporting documentation and system resources allocated in absence management (in school and employment).

 

Top Sickle Cell Triggers: (Mackey, M.N. 2019., I can cope: Five basic parental strategies to cope with sickle cell disease., Texas Human Services Sickle Cell Task Force).

  1. Extremely Cold Weather

  2. Extremely Hot Weather

  3. Dehydration (not drinking enough water)

  4. Playing Strenuous sports (football, basketball, track)

  5. Strenuous Chores

  6. Lack of Sleep (less than 7-8 hours a night)

  7. Conflict (socioeconomic status, parental stressors)

  8. Poor dental hygiene (can cause tooth pain)

  9. Poor Diet

  10. Common cold, flu, viruses (promotes fever and pain)

Project SYSTEM expresses sincere gratitude to the organizations that help conduct this research.

If you, or someone you love living with Sickle Cell Disease are interested participating in Project SYSTEM, please submit your email below to receive interview feedback! Please join our discussion boards and let us know how you endure and cope living with Sickle Cell Disease.

contact : resourceinfo@sicklecellprojectsystem.org

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