Christopher Statton was born with hemophilia, a rare blood disorder that interferes with the body’s ability to form clots and stop bleeding. He was lucky, at first — new therapies to save children like him from bleeding to death had just been developed.

Then, he was profoundly unlucky. The treatment, an infusion of specialized proteins culled from blood donations, became tainted by HIV in the early years of the AIDS epidemic. He was infected before he was 10.

Statton, now 39, grew up under a death sentence. He lived, but most of the children of his generation did not.

Now survivors like him — plus the family and friends of those who didn’t make it — are being invited to share their stories as part of a project to capture the living legacy of AIDS.

“It’s important to talk about this — about what happened to the hemophilia community,” said Statton, a San Francisco resident. “There are a lot of people who still have trouble discussing it, or still wrestle with how to talk about it.”

The HIV Story Project, launched seven years ago to capture personal stories that illuminate the epidemic, is focusing this year on how HIV impacted the hemophilia community. Beginning Friday and through the end of next week, organizers are making available a video recording booth in Emeryville for anyone who wants to share a story.

The hemophilia community was among the hardest hit by the AIDS epidemic in the 1980s, when the blood products that kept them alive became tainted by unchecked HIV in the nation’s blood supply. Hemophilia, a genetic condition that almost always affects boys, is marked by an absence of a key protein in forming blood clots.

Today, the condition is treated with a synthetic protein formula that patients administer to themselves as needed. But when the epidemic started, the formula came from blood donors.

It was only when people with hemophilia began to get sick with HIV in the early 1980s that drug manufacturers and blood banks realized the vulnerability of the nation’s blood supply. Still, they took years to correct the problem and begin screening for the virus.

Of the roughly 10,000 people with hemophilia in the United States in the early 1980s, more than half became infected with HIV, and 4,000 died.

The best known of these cases was Ryan White, a teenage boy who had hemophilia and eventually died of AIDS, but not before suffering discrimination and ostracism from his community in Indiana. His parents successfully fought for his right to attend middle school after his district banned him due to the stigma of AIDS and misguided fear for other students.

In the years before he died, White became a poster child for the epidemic, and he and his family became vocal proponents for fair treatment of people with AIDS. The Ryan White Act, which provides aid to people who need help accessing treatment, is the largest federally funded program for people with HIV/AIDS in the United States.

But for years, the role that people with hemophilia played in the epidemic, and the toll that AIDS took on their community, has gone largely unrecognized. Ties between the gay and hemophilia communities were often rocky.

“Back in the early days, the hemophilia community was reticent to connect themselves to HIV/AIDS because of the stigma. There’s still a lot of hesitation,” said John Cunningham, executive director of the National AIDS Memorial in San Francisco, which is a partner with the HIV Story Project. “I tell them that we are doing this from the center of our heart and soul. We acknowledge what happened. We hear the voices of mothers and families that lost. It felt like no one ever recognized the tragedy that really occurred.”

The HIV Story Project has recorded more than a thousand videos from survivors and others affected by HIV, archiving them online at www.thehivstoryproject.org. Co-founder Marc Smolowitz said he hopes to add 50 to 100 videos from people in the hemophilia community by the end of the year.

Statton, who is planning to record a video this week, said he hasn’t decided yet what he’ll talk about. The stigma of HIV didn’t touch him as much as it might have, in large part because his parents made him keep it a secret for most of his childhood. It wasn’t too hard for him, but his parents surely felt scared and isolated, he said.

It was later, as his friends started growing into young adulthood — going to college, getting jobs, settling down with girlfriends and boyfriends — that Statton struggled most. He suffered infections related to AIDS and repeated hospitalizations for hemophilia and HIV that interrupted his schooling. When he was just 25, he developed cancer related to HIV that he was sure was going to kill him.

“I definitely thought HIV was going to take my life,” Statton said. “It took me a long time to really be able to accept where I was at. I thought I could just push myself into a normal path, instead of thinking about what I’m capable of doing and what I’m passionate about.”

He found his path, mostly in arts and advocacy work. For four years he was executive director of the Roxie Theater in San Francisco. Now he works and volunteers with organizations that fight health disparities and other injustices. He’s also an artist with the Clarion Alley Mural Project.

Not everyone wants to talk about what they went through in the 1980s, Statton said, and he understands why. “They may have just moved on with their lives,” he said.

But others feel a responsibility to speak up. Among those who have already shared stories is Dawn Pollard, whose brother, Kurt Pollard, died six years ago. Officially it was complications of hemophilia that killed him, but he’d had HIV and hepatitis and other related conditions, and Pollard is convinced they all factored into her brother’s death, just shy of his 50th birthday.

AIDS was a nightmare for her brother and his family. He was married by the time the epidemic began, and when he and his wife learned she was expecting a child, doctors told her to end the pregnancy to avoid the possibility of having a baby born with the virus. They chose not to abort, and neither his wife nor daughter ever contracted HIV.

But the losses her brother endured were profound, Pollard said. And friends with hemophilia did unknowingly infect their wives — and sometimes their babies. In his childhood, her brother had gone to a summer camp for kids with hemophilia; by the time he was in his 30s, all but one of the friends he’d made there had died.

“To the best of my knowledge, there’s only a single hemophiliac left who knew my brother,” Pollard said.

She’s now president of the Hemophilia Foundation of Northern California, continuing advocacy that helped her deal with the grief of her brother’s death and carry on his legacy. But when she first heard about the video recording project, she wasn’t sure if she wanted to participate.

“I had the feeling that I didn’t know if I belonged. I didn’t know if I had a story,” Pollard said. “I didn’t want to make it about me.”

She did make a video, though, at an annual hemophilia conference earlier this year. Once she walked into the booth, she just started talking and couldn’t stop.

“I talked about the fear. The feeling of impending doom when it first started. And how it shaped me, wanting to not sit by and be silent,” she said. “I felt healed when I came out.

“What happened, happened, and that can’t be undone,” she said. “But what we can do is make sure it gets on record.”

Erin Allday is a San Francisco Chronicle staff writer. Email: eallday@sfchronicle.com

HIV Story Project

Anyone who has been touched by the AIDS epidemic is invited to participate in the HIV Story Project. A video recording booth will be available Friday through Thursday at the Hemophilia Foundation of Northern California offices in Emeryville. For more information call (510) 658-3324 or go to www.hemofoundation.org.