Special Blood

These days, documentaries about diseases are not uncommon. Though they vary in style and quality, they generally share the same purpose: to communicate what living with those diseases is like. Special Blood has a more basic mission. It's out to raise awareness that hereditary angioedema (HAE) exists.

Awareness matters, because whilst this disease is rare (affecting between one in 10,000 and one in 50,000 people), around 25% to 35% of sufferers are believed to die when still very young because they don't receive proper care. In this film, whose director has the illness herself, one speaker after another describes experiences of misdiagnosis in emergency situations, and of medical personnel who refused to listen when they explained their circumstances and insisted on providing inappropriate treatment instead. This, of course, will be all too familiar to people with other illnesses, but the terrifying thing about HAE is the speed with which it can kill. It causes acute attacks of swelling which can occur anywhere in the face, hands, feet, genitals, digestive tract and throat. Pain and vomiting are common. Suffocation - sometimes just minutes after an attack begins - is a serious threat.

The title comes from a mother's explanation of the disease to her child. HAE is hereditary. Whilst every parent experiences anxiety about children who are out of sight, with little Ava there is real reason to be afraid. But Ava is a bright, happy child. The confidence with which she explains to her friends that she has special blood seems to have spared her the isolation that other sufferers talk about here. Her joie de vivre provides balance as we hear tales of exclusion and disappointment, horrible personal suffering and the loss of children. It's a combination that works well. Ava reminds us what's at stake, and what might be possible in a future in which HAE is no longer so dangerous.

Some people will find the bleaker side of the film difficult to watch, even though much of it is narrated very calmly, creating that disconnect between what might instill panic in the average person and what many chronically ill people live with day to day. There's a lot of emotional push and pull. Less effective is the explanatory side of the film; viewers probably will remember the disease but they won't understand much about the mechanisms involved in it. This may, however, make the film accessible to a wider audience. It also makes it possible for medical voices to be treated as an adjunct to those of people directly affected, which encourages empathy and brings out important aspects of the experience of being a patient.

Although this is Metzger's first feature length film as a director, her extensive experience as a producer shows in the quality of the finished product, which far exceeds what one would expect given the small budget involved. It's an engaging documentary on a little known subject, and unlike most of its peers, it really could save lives.