Video Portrait: Living With Hemophilia

I have two boys with severe hemophilia A with inhibitors. This means that their bodies do not produce enough Factor VIII clotting factor in their blood. Inhibitors make it hard to treat because they combat the medicine used to treat hemophilia. In short, they bleed and bleed... and their bodies try to reject the medical treatment. This affects their joints regularly... their ankles and knees especially. They swell and become very painful. As you can imagine, this affects their lifestyle. They cannot play hard-contact sports like football. Their options in life are limited. Hemophilia affects not only the patient, but also the caregivers. I plan to get footage of the differences that hemophiliacs and their providers experience on a daily basis. I have flexibility: I can tell this from the patient's perspective, from the caregiver's perspective, from the treatment provider's perspective, or from any combination of the three.

Obstacles to this project are: bad lighting/environment (my messy home), legalities (home health agency's permission), learning the features of a new camera (borrowed a Panasonic DVX from KPTS)

Using interviews and B-roll, I hope to get a good testimonial that can be used by the hemophilia community (ex: Hemophilia Federation of America's Voices campaign: http://voices.hemophiliafed.org)

Here is an outline of info I plan to gather (or draw out of subjects):
  1. Diagnosis/Finding Out (first thoughts/feelings...)
  2. How it changed life (career, finances, priorities...)
  3. Treatment
    • What did they need? (medicine, doctors/nurses...)
    • Obstacles (cost/money, insurance, geographic location/resources...)
    • Who helped? (non-profits, state...) How? (support, education, healthcare...)
  4. Home Health Care (frequency of treatments/visits, relationships...)
  5. Hemophilia Treatment Center (burden, services, experiences...)
  6. Expand on Education (summits, conferences...)
  7. What Would You Change
    • If you could change anything, would you? What? How? Why?
    • What needs to be done? What can be done? (dreams and reality)
    • How can legislators help? (what powers do they have? what can they change?)
    • How can you help? (how to advocate for change)