As NHF continues to celebrate it's 75th Anniversary, the organization sat down with community member Eldon Ham to learn more about his story.
Eldon: I'm Eldon Ham. I just turned 71 years old about a week or so ago. The interesting part of my story, I suppose, is the beginning. And now, the fact that I'm here to tell it is kind of interesting, at least to me. And the beginning might be interesting to many of the members because it was in the 1950s and 60s; there was no blood clotting factor to treat me back then.
So [I] had to do everything the hard way. And, and a lot of what I did, I suppose was because I didn't know I couldn't, although that got me in trouble a couple of times. I had a lot of bad experiences with doctors, not because they were bad people or even the medicine was bad. It's just there wasn't any way to treat me.
So, I just had to, take it as it came. And when I was young, I noticed that the bleeds would come in bunches. Like, lots of ankle bleeds, and then lots of knee bleeds, and then lots of hip bleeds. They, they sort of progressed that way, I don't know. And they did it that as I got older.
So we knew something was amiss when I was two or three years old. When I was three years old, we knew for sure because I was in a tricycle race with my neighbor Jane, and we went down a hill and I kinda lost control of my tricycle. Crashed into an elm tree. Smashed into the tree with my face, knocked out a tooth and cut up my face a little bit, bit my tongue, that sort of thing.
And my mother was quite shocked and threw me in the car and off we went to Peoria, Illinois. I was, I was growing up in a small town north of Peoria. There was about 1,200 people there. Peoria to us was the big city, about a hundred thousand people. And so I wound up in the hospital there and I don't recall how long, but I was there for a few days until they could figure out what was going on with me and, and how to just monitor me.
But they packed everything. It was something that they could treat. So, but that was our first inclination of the real nature of the problem. As I got older, it was more the same thing. When I got quite a bit older, like maybe nine, 10 years old, I had a lot of trouble with my knees, and my knees would develop a bleed.
Very painful as a lot of people might know. I just had to let them go. There was really no way to stop it or deal with it. Sometimes I would try to bandage it really tightly. Ten percent of the time that sort of worked- a little. But we just have to let it bleed.
And unfortunately, what I had to do was lay awake until I had to fall asleep, which didn't happen easily even all night long, alone, by myself in my room. TV in those days wasn't on all night long, especially where I grew up, so that went away at midnight. So it was just dark, you know, with me and the pain. So that wasn't very good. But it builds character, among other things.
Eventually my dad, who was a factory worker at the local cheese plant, spent a lot of time at the library and discovered nutrition, food supplements, that kind of thing. Certainly doesn't cure hemophilia. It doesn't even begin to; but it did give me a healthier body that recovered better from the bleeds, I think, and a little faster. The bleeds still came.
The first time I discovered Factor was almost more like it discovered me. I was in college. I had managed to get myself into University of Illinois. Still had bleed problems from time to time. Made collage a little harder, but [I] still managed. But one time there, I slipped on a dormitory floor. I mean a hard floor technical dorm, and fell flat on my back, sort of a buttocks hip area. I guess you'd call it a contusion of some sort.
Anyway, it started to bleed. I just couldn't move. In fact, I was unable to really deal with the problem. I just laid flat on my stomach for like two days on my bed. Finally, my roommate said, you know, "You're not gonna stay like this." So he ran it up some guys and, and they hauled me off to local hospital called the Carl Clinic. And I think it's actually in Urbana, Illinois. Champaign or Urbana.
And there was a hematologist there who knew what I had, knew what to do about it. This was 1972, so the clotting factor was invented more or less in, you know, '69 or so. I never heard of it until I wound up in the hospital. The doctor, whose name I still remember, was a young guy then, Dr. Agotti. And so he oversaw all that even tested me and found out that I had Factor IX.
I'm not sure he discovered the the, the factor level, but I guess maybe he must have. And so they began treating me. They had factor on hand, which is quite remarkable. And, and I still remember how it felt for the- something to actually work for the bleed to stop. The pain didn't go away right away, but it changed character. It became less hostile and more manageable. And frankly, I really didn't care if- when it's getting worse, I care when it's getting better. I don't care that much.
And, and so I was in the hospital again for a few days, I would say. Don't recall exactly, two or three, maybe four.
But that was an epiphany for me. So I'm giving you a little bit of a, a fast forward from when I was a kid all the way up to that point. But I would say that maybe three times a year I would have a bleed. Usually internal, usually a joint- once in a while, a spectacular nose bleed, but not that often. You know, like once every two or three years.
One time I was sort of victimized by that. Somewhere around 8, 9, 10 years old, I had a really bad nose bleed. You know, one of those things where, you know, we had to have a sort of a wash basin near me so that it was, the blood had somewhere to go and, you know, I kind of held it together.
My mom was pretty good at conveying confidence. And so I never like, freaked it too much. But the problem was kind of looking back on it and even at the time, putting two and two together and actually getting four, I had had a bleed in my calf and my country doctor who had tried different things on me, had the spectacular idea to give me blood thinner.
Blood thinner, to kind of clear out the swelling. You know, it sounds sort of logical on its face, except blood thinner to a hemophiliac is not the best idea. And so it led actually to the nose bleed I think, cuz I was still recovering from the, from the calf bleed. And then the next thing you know, I get this nose bleed.
It didn't wanna stop. It did eventually. I don't have zero factor or one percent, but I'm somewhere in the severe range. But not completely. I've had it tested around four or five percent, but it's hard to nail it precisely. So I had good experiences and bad experiences. But the upshot is a lot of experiences.
It, hemophilia did come to my rescue actually, once. I qualified, It turned out, when I went to college for a thing called an Illinois Division of Vocational Rehabilitation Scholarship. And if you had some disability, they would provide a scholarship- and a real scholarship! So like, you didn't have to pay it back.
And so somebody I knew from home, may have been our local state representative, whose name is Jim, I still know him got me connected to them and, and they said, "Yeah!"
They would pay room and board, not tuition, but room and board up to the cost of the dormitory. fees. Well, at Illinois, I stayed in the dormitory, so they, they paid for all of that at U of I and we didn't have any money and, and it, we would've had to borrow it from who knows where.
So that was a lifesaver. And it was only because I had the hemophilia. But in those days, that was 1970. So when you're in 1960s and early '70s, even people with disabilities had difficulty, just because you had disability. Not the fact that I had hemophilia necessarily. So it was the kind of thing you didn't want to advertise.
If I had a part-time job, I didn't wanna tell my employer because I was afraid I'd get fired just for having it. And I guess I never did, but I was afraid that I would. The Rehabilitation Act of 1973 first addressed as a federal law that addressed disabilities and people with disabilities.
It took a few years, but people with disabilities finally gained better acceptance in general and also legally. As it happens, I took an interest in law, so I went to law school after college. That same scholarship did pay in law school, but only to the extent of a public university cost like a dormitory.
Well, I wasn't in a dormitory, so I had to supplement it myself. So all of that together combined to get me through law school. I had one major bleed when I was in law school. Or, actually, I won't say bleed- residue of a prior bleed.
I had tried out for the track team when I was in junior high.
Terrible idea. I was pretty fast though, and won a few metals, but I pulled a groin and it bled and bled and bled so much that I missed the last three weeks of seventh grade, the entire summer, and the first couple of weeks of eighth grade.
I did recover, but by the time I got to law school the Northwestern University Hospital in Chicago examined me and discovered I had a pseudo tumor exactly where that bleed was in my lower left abdomen.
And it was, it turned out to be a 2.2 pound mass. And so it was, that was 1973. So again, the clotting factor was a pretty new thing. Dr. David Green and his team at Northwestern did major surgery, removed that thing was in the hospital for three weeks, the first two of which were for testing. It was only a week after that I had to recover.
So that was, that was an eye-opener. And one way that hemophilia can sneak up on you at different times for different reasons and you don't even quite know it.
Over the years, when I got into my thirties, I joined the board of the local Illinois Hemophilia Foundation at the time and was able to give us something back and contribute. They even made me president for a while. I think it was one of those things where it was time to be president and everybody else stepped back in there and I was standing in the front. So, I did that for a while for about three. And and I had reasonably successful law career and somehow made it to age 71.
And now here I find myself talking to you and the find people at the National Foundation.
Click here to learn more about NHF's 75th anniversary.