By Renae Baker

Dave Berkemann, born in 1945, calls himself an “Old Grump” and an “Old Car Nut,” only one of which is true!

“When I was a boy, I was told that I was born with two diseases: Christmas Disease and Antique Cars Disease,” laughs Dave. “My parents said, when I was three or four, if they couldn’t find me, they’d go out in the pasture and look. There was an old Model T laying out there and I’d be sitting in it.”

“I bought a Model A when I was just twelve years old. When I was fifteen, I bought a 1930 Coup. They’re both still in the garage. They’re shiny and they run. All original. Parades are all they’re really good for.” Dave loves restoring antique cars, including that old 1917 Model T that he used to hide in.

Dave grew up milking cows, feeding chickens, and collecting eggs on a farm in a small town in Iowa. He’d do his chores, bus to school, come home, and start on chores again. “Truth be known, there were many days when I wasn’t doing chores because I was laid up with a hemorrhage.” Pointing to his forehead, “I don’t know if you can see this dent. I fell against the foundation of the barn. I don’t know how I lived through it.” He says with nonchalant understatement, “There was no treatment at that time.”

“Back in the 1940s, they just said ‘This guy’s a bleeder.’” His condition was not a surprise to his parents, as Dave had a brother three years his senior, who also had the condition. He had injuries too. “His reactions to them were different than mine. I tended to take a pain pill and go on. He tended to lay down,” he chuckles.

After high school graduation, “I knew I couldn’t farm. I thought of becoming an auto mechanic, but when I was in the job market, many companies wouldn’t consider a hemophiliac. Jobs that I would’ve been good at weren’t available to me. The companies provided the insurance and didn’t want a high-dollar patient.” He decided to go to Oklahoma State Tech and took a two- year appliance repair course. He found employment at a repair company but was tasked with deliveries and pickups of heavy appliances. The work was too heavy. He went on to a variety of jobs, eventually landing in sales of municipal equipment which fit his needs and personality well. All through his working years, hemophilia challenged him. He experienced many injuries on the job, sometimes several hundred miles from home.

“When they came up with a factor, you had to be near a big city to get it. The factor was so expensive and hard to get that you tended to not do it if it was a minor bleed or something you could live with. You saved the treatment for the extreme bleeds,” Dave recalls. “In the 1970s when you could keep it in your refrigerator, I still didn’t use it like I should, because it was expensive.” On top of that, “I had to pay my own insurance. It was half of my income!”

Dave has never taken factor prophylactically and has only used it for more serious bleeds. Asked if that has led to permanent damage, he says, “Oh yes! My problem is pain caused by bleeds forty years ago that left damage. Even though I know better, I still look at it as something you take when you need it. I’m not being smart about it. It’s entirely an old grumpy guy’s idea,” he says, sheepishly. “I really should take the stuff!”

It can be tough to change your mindset if you lived through prohibitively expensive factor and the blood scandal. Dave remembers, “In 1953, I had been in the hospital forever, and social workers came to me and said, ‘You’ve got to understand; you’re not going to live a normal lifetime.’ They told me I’d never walk again. They said most hemophiliacs make it to eighteen or twenty before something happens to them, so that was my frame of mind. Then we got factor, so I thought, well gee, maybe I’ll make it a little longer!”

“But around 1980 with the blood scare, my HTC said, ‘We just assume anybody with hemophilia has HIV AIDS. So sorry, but you’re probably going to die of AIDS. Well, a couple of years later, they develop tests for it, and they said, ‘You don’t have HIV, but you do have hepatitis C. Sorry, there’s no cure. The incubation period is around 18 years, and so within 20 years, you’re going to have problems.’

So, here I am, 45 years old and everybody keeps telling me I’m going to die!” He laughs for a moment. “It caused problems on the job, too. I lost one job simply because the other workers didn’t want to be around me. We shared a drinking fountain and a lunch table, and they thought that was a problem.”

Dave didn’t begrudge them. “I had a friend who had polio. Lying in the hospital, I knew people who died of diabetes. I just felt everybody’s got something. That’s the breaks.”

“Something I fight yet today is the lack of education about hemophilia.” He relates how he has especially seen this outside of metropolitan areas. “This can affect you in emergency situations. If you’re in a car accident in the middle of Mississippi or somewhere, emergency rooms don’t know what to do for hemophilia. They don’t have factor available, or they don’t know which factor to use.”

“The most life-threatening situation I ever had was a routine visit to the dentist. He proceeded to give me a numbing shot into the jaw area and hemorrhaging occurred. “I couldn’t breathe. Another time, the “best” hematologist that we have here was giving my brother one factor product at the dosage of a different product. He wasn’t administering enough.”

“I had my hip replaced here in Iowa. I got a good hip replacement, but did I have hemophilia problems! They cannot and will not take care of it here.” In fact, the plan for his hip replacement was to fill up on factor immediately before the surgery, and then twenty-four hours later, they were going to give me a full 100% dose again.” However, the needle infiltrated, and the second dose went into the tissue, not the bloodstream. “They wouldn’t give me more factor. They said, ‘It’s under your skin, so you got it.’ Luckily, the only bleeding he experienced was at the site of the bad injection. “My arm was bigger than my leg, but it could’ve been really serious if my hip had bled.”

Recently, his doctor wanted Dave to have a procedure, but Dave brought up guidance from three HTCs that said the procedure was not recommended for hemophiliacs. The doctor wouldn’t listen to the research. Dave continued to advocate for himself, which escalated to an argument.

“Well, why don’t you just move to Minneapolis?” the doctor suggested.

The medical office was located in a small town outside of the Des Moines area. Dave says, “I’m sure there’s someone around that knows all about hemophilia but sometimes finding that person is really tough. There are a bunch of people who claim to know all about hemophilia when, in fact, they do not. They want to know, ‘When did you catch it?”

Dave would like to share his experiences with young people with hemophilia. He urges them to participate and support the groups such as the Coalition. “They’re going to learn a lot and get a lot of help. The landscape of hemophilia is very different today than it was when I was a boy, but there is a lot to be learned about the history of bleeding disorders.”

“I don’t know that I’ve run across a youngster with hemophilia today who isn’t on prophylactic treatment. They were born with factor available to them. They would never make the silly decisions I have! Today, it’s covered by insurance companies and Medicaid. The younger generation couldn’t possibly understand how life was before factor.”

Dave still lives in Iowa outside of Des Moines with his wife where they enjoy their children, grandchildren, and dog. He volunteers as an Ombudsman for long- term care residents at a nursing home. He still works on his old cars. Just like him, they don’t go too far from home these days, but they still work, they look nice and they’re all original!