Self-Advocacy Skills for Blood Disorders
Learn to confidently speak up at school, workplace, hospital, and community. Practical scripts, rights, and tools for Kenyans with haemophilia, SCD, VWD – 2025 edition.
Learn to confidently speak up at school, workplace, hospital, and community. Practical scripts, rights, and tools for Kenyans with haemophilia, SCD, VWD – 2025 edition.
2025 Kenya Haemophilia Association survey: Patients who advocate get factor 3x faster and face 70% less discrimination.
Self-advocacy = Your voice + Your rights + Your confidence
Explain in 30 seconds: "I have severe haemophilia A. I bleed longer, not harder. I use factor VIII."
• NHIF covers factor
• Disability tax exemption
• Exam accommodations (KCPE/KCSE)
• Workplace reasonable adjustments
Practice daily: Who you are → What you need → Why it matters → What happens if denied.
You say:
"Hello Teacher/Dean, my name is [Name]. I have haemophilia and may need extra time during exams if I have a bleed. Here is my doctor's letter. Can we discuss accommodations under the Persons with Disabilities Act?"
You say:
"I manage a medical condition called haemophilia. It doesn't affect my work performance. I may need 1-2 days off quarterly for hospital visits, which I’ll schedule in advance. I’ve attached my fitness-to-work certificate."
You say:
"Hello Doctor/Pharmacy, I’m [Name], NHIF number [XXXX]. My factor VIII was approved on [date]. Today is day 5 without it. Under NHIF guidelines, delays beyond 48 hours violate my right to health. Please escalate to the hospital superintendent now."
You say:
"I can play football, just not heading the ball. If I get injured, I’ll handle it – I’ve done this since childhood. Your support means trusting me to know my limits."
State facts → Share impact → Suggest solution
Example: "I haven’t received factor in 7 days (fact). I now have joint pain and can’t walk to school (impact). Please release my dose today or I’ll escalate to NHIF complaints desk (solution)."
| Week | Action | Goal |
|---|---|---|
| 1 | Practice elevator pitch in mirror | Speak without stuttering |
| 2 | Tell one trusted friend | Break silence |
| 3 | Ask teacher for small accommodation | First win |
| 4 | Call hospital about factor status | Use script confidently |
• Grade 8 student in Kisumu got 30 extra minutes in KCPE after self-advocacy
• Nairobi office worker negotiated work-from-home during joint bleeds
• Mombasa mother forced hospital to release factor in 4 hours using NHIF script