The Big Rock, and the Hammerness
“So many people feel like they’ve been hit in the head with a big rock when they find out that someone has hemophilia,” says Virginia Hammerness. But even today, she finds that “a lot of people don’t pay attention to their disease.” That surprises her, but she’s also found that it has nothing to do with their education, or their means.
“I had a cousin…I lost track of her. Her parents didn’t do anything about her hemophilia. She was in a wheelchair by the time she was a teenager,” Virginia recalls. She also remembers a little boy whom she taught years ago, when her own children were young. “I think the family was transient. It was clear that they didn’t have much,” she remembers. “When I told them there was something they could do for all his terrible bruises, the mother replied ‘he seems to be okay,’ and didn’t take much interest.” It was an upsetting moment. Not long later they moved on.
For Virginia, hemophilia has been part of life since birth. She could see it in her family nearly every day. “Father had hemophilia bad,” she remembers. “When he had transfusions, there was a screen between him and the donor so they didn’t know who it was on the other side.”
It’s easy for Virginia to trace the disease for at least a couple of generations back – to an immigrant grandmother – and into the future, to her son.
Her grandfather – the remarkable A.P.Giannini, founder of Bank of America, had eight children, only three of whom survived to adulthood. All of them had hemophilia, including her father – A.P.’s second son, Lawrence.
For her part, Virginia has two boys – the oldest, Philippe, who does not have the disease, and her son, Lawrence, who does.
“When you have hemophilia in your family like we did, you have your children tested,” Virginia reminds us. “Lawrence was born in the early 1960s and was tested by the time he was 18 months.”
Like any child, Lawrence could be a handful.
Virginia remembers one Christmas very distinctly. He hit his two front teeth and blood started oozing out. He was taken to children’s Hospital in Los Angeles and stayed over the entire holiday. They couldn’t get the bleeding to stop, so they kept him at the hospital. Virginia was told by the doctors that she shouldn’t come in because it would make Lawrence homesick. “I stayed away so long, the nurses started to wonder whether I cared about him!” she smiles. “When I got there, he was pumped so full of plasma that his body looked like a balloon. At that point, they were afraid he was going to have a heart attack.” Luckily, he didn’t, and even better… today’s treatments are vastly improved.
But Larry didn’t stop his doctors from getting a heart flutter now and then. As a child, Larry loved skiing. Today, it’s surfing – which leads to injuries, even now. “His doctors are always very concerned for him,” Virginia says.
In the early 1960s, and even today, hemophilia treatment takes a family’s full attention. Larry was lucky that his dad could offer some help. “My husband, Philippe, was in the Navy Medical Corps during Korea,” Virginia reports. “So he was able to give Larry infusions.” But the technology of the time proved difficult. The blood for transfusions had to be kept cold so it didn’t spoil…and since the blood was so cold, the glass syringes would freeze, causing the blood to freeze in the syringe. “He would use five or six syringes in a session,” Virginia says. “Plastic syringes were just coming onto the market, and Larry was one of the first patients to use them.” Something as simple as a plastic syringe was a major help for Larry, and everyone since.
While she struggled at the time like anyone whose child had hemophilia, one of the advantages of being a granddaughter of A.P. Giannini was meeting some of the people who made strides in hemophilia research, like Judith Graham Poole.
“Judith Graham Poole was very caring and intelligent. She was also very down to earth and concerned about the people she was working to help. Being a woman, and a PhD rather than an MD, meant that many in the medical community at the time did not take her as seriously as they could have. She invented cryoprecipitate, which was a godsend. It meant that we could travel.”
Virginia’s father instilled in her a love for travel. “Father loved to see things that were unusual.” She did the same for her kids. “I don’t think they appreciated it so much,” she says with a smile.
It was 1964 when Poole’s Bank of America-funded-research was published. But her father and grandfather had passed away more than a decade before. “I’m sure they would have been proud,” Virginia says with certainty.
I’m not sure when I heard of NHF,” Virginia confesses. “It was probably from one of the doctors or nurses around when Larry was diagnosed.” When he was a child, Virginia had no idea that there was a burgeoning network of other hemophilia patients. Today she certainly does.
“I tell anyone with the disease that NHF is who they need to contact. They’re on top of any hemophilia research. They know where to tell people to get help,” she says.
“The most important thing is to find a cure for hemophilia,” she says emphatically. “There’s going to have to be a lot of research. It’s a very difficult illness. It will be a huge medical milestone to find a cure. That’s why I give.”