70+ years of wisdom living with a rare bleeding disorder.

Dave Berkemann describes himself as an “old retired farm boy” who likes to collect classic cars in his garage in central Iowa and volunteer with the state Department of Aging when he is well enough to do so. Plasma-based therapy has allowed him to live a long and productive life. A life he never expected to have. 

Berkemann is living with severe hemophilia B, a rare inherited bleeding disorder. Hemophilia is sometimes known as Christmas disease, after the 5-year-old boy, Stephen Christmas, who was the first to be diagnosed with it in 1952. Berkemann started experiencing symptoms of hemophilia B when it was still just referred to as “being a bleeder.” From the moment he was born, just handling him like a normal baby left bruises. Growing up in rural America meant, that, even though he had regular pain and hemorrhaging, little healthcare was accessible to him geographically or financially. In 1953, at 8 years old, his family left him at a hospital in Des Moines, Iowa, to receive medical care due to an injury. Church clergy that visited him told him he would not live past his late teens, which he carried with him the rest of his life.

It wasn't until Berkmann was 10 years old that he was able to learn more about his disease when doctors officially identified it as hemophilia. It would still be some time before the difference in hemophilia types was discovered. He has experienced the effects of this disorder for over 70 years and, in the first decade of his life, had very few options for treatment. At that time, blood transfusions were the standard of care, and Berkmann required 28 blood transfusions in 1962 for a dental problem alone. 

Hemophilia B, also called factor IX (FIX) deficiency, is an inherited genetic disorder (though one-third of cases are caused by spontaneous variants in the F9 gene that are not inherited), in which the factor IX clotting protein found in plasma is either missing or doesn’t work. In Berkmann’s case, the disorder does appear to be genetically passed down in his family. His mother's half-sister passed away from the condition in 1929. His daughter has a son with the condition, and his older brother, who also lives with the condition, has grandkids with it as well.

Hemophilia occurs in approximately 1 in 5,000 live births, with around 30,000 people living with the disease in the United States today. Hemophilia B, which Berkmann has, makes up only one-fourth of these cases, making it even more rare. 

In 1965, Berkmann began receiving plasma-derived therapy, which has changed everything for him, by allowing his blood to clot properly and improving his quality of life. He finds his plasma therapies to be quick and reliable and said when factor IX became available, “we thought Heaven was here.” Plasma helps treat hemophilia because it replaces the missing blood clotting factor in the patient so that the individual’s blood can clot properly. 

He says that no aspect of his life was unaffected by hemophilia B, even when treatment improved his health. He was sometimes referred to as the “town cripple,” and was denied employment in the limited number of jobs his condition allowed him to do. Employers did not want to take the risk, at first, just not wanting to raise their insurance premiums. When the AIDS pandemic broke out, he was even more ostracized, as it was assumed anyone taking a blood product had AIDS. He lost the job he had during this time. All the while, he says having medication that kept him relatively healthy made all the difference. Though plasma-derived therapies are one of the most expensive medications in America, he is grateful that the product he is on is “much less than most recombinant products.”. Recombinant products are proteins that are created by combining genetic material from two different sources in order to alter their characterization. Berkmann describes one of his biggest hurdles living with hemophilia B over the last 30 years is simply that healthcare professionals are not familiar with it, due to its rarity. Berkmann thinks there are only a few hundred people like him in the entire state of Iowa. Doctors who lack medical knowledge about severe hemophilia B are one of the main problems he faces anytime he needs medical care, even when it is not related to his condition—like for a joint replacement he recently had. 

If Berkemann could share something with folks considering donating plasma, he would want them to know that it helps millions of people get the medicines that they need. He is leery of the financial component of it, concerned that it has impacted the charitable reputation for the folks in his town. He would love people to see donating plasma just like donating money to a cause, a charitable thing to do.

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