A patient's story
Kazuyoshi, Haemophilia A with inhibitors
Kazuyoshi Aoki was born in 1956 in Hokkaido, Japan. He was diagnosed with haemophilia at an early age. “At that time,” Kazuyoshi explains, “I was only able to get treatment at Hokkaido University Hospital, and this meant that when internal bleeding began, I could not get treatment when I most needed it.” Concerned by the limited access to doctors and a lack of information on how to manage their son’s condition, Kazuyoshi’s parents got together with others in their area to form a local patient association. At first, this association was mainly concerned with getting hold of fresh blood for patients when bleeding episodes occurred, holding consultations at schools and workplaces, and helping to reduce medical costs. Later, they began to take on a broader role.
“The Hokkaido Haemophilia Patients Association was a pioneering group in Japan,” Kazuyoshi explains. “It made a major contribution to the establishment of the Hokkaido Intractable Diseases Federation and subsequent support systems for patients with intractable diseases.” He feels proud to be part of the patient association. “It has brought us all closer together,” he says. “And, by working with doctors and drug companies, we have been able to contribute to the development of medical treatments.”
In 1996, Kazuyoshi was formally diagnosed with inhibitors. At that time, inhibitor treatment did not include prophylaxis medication, and patients required immediate treatment in the event of bleeding. “In this sense, I was in quite a different situation to the other haemophilia patients,” Kazuyoshi says. “The post-treatment recovery phase also took quite a while, and the extended period of recuperation increased the burden on my family.”
HQMMA/N7/0914/0067. November 2014.