Lipomatitis

One of the few things my father had managed to work out about his father was that he must have lipomatitis. This is a condition which causes multiple, visible lipoma on the forearms, trunk, and occasionally the legs. My father has several hundred. I have around fifty. Lipomatitis is fairly rare. Multiple familial lipomatitis is vanishingly rare. According to the surgeon who removed my lipomas recently, estimates range from 1 in 1 million to 5 in one million. That is as rare as Zollinger-Ellison syndrome, or all those other rare diseases you have never heard of. The lumps do not develop into cancers. One or more lipomas may become painful, in which case it is known as Dercum’s disease type II. If this then spreads to other lipoma, it is called Dercum’s disease type III. This is even more vanishingly rare than lipomatitis.

More interesting than its rarity is the way it is passed through families. It is a dominant condition. That is, if a child has the disorder, then a parent must have the disorder. If a parent has the disorder, it has a 50/50 chance of being passed to the child. Both my father and I have lipomatitis. My grandmother does not have lipomatitis. Therefore, my grandfather, my father’s father, must have lipomatitis. There is no way for the disease to be passed on recessively, although in families with multiple familial lipomatits there does tend to be a higher number of single lipomas even in children who do not have the disease. The bottom line is that if you have lipomatitis, the full blown symptoms, then one of your parents must also have it. When I started my search I knew, therefore, that was looking for a man with lipomatitis.

It’s difficult to overemphasise how easy it is to notice lipomatitis, once you know what you are looking for. It’s easier to demonstrate with a picture than to explain. Here is a picture of the forearm of a man with lipomatitis.

Men tend to be very much worse affected than women. It’s believed that testosterone interacts with the lumps, causing their proliferation. However, even in a mild case like mine, the lumps are obvious if you are looking for them. For comparison, here is a picture of my arm.

The lumps are clearly visible – there is no angle at which my forearms look smooth/ blemish free.

They are particularly visible when sufferers fold their arms – see this picture of my own folded arms. The stitches are from the removal of one very large lipoma, and two smaller ones near it.

I knew, then, that would be the final test if I met somebody and I wasn’t sure whether they were the right person. They would have lipomas. Lots of them. The science said they had to.

With the help of Ancestry, and Dennis’ voting record, and the plot he’d been buried in, under the wrong name, and Dennis’ friends in Tamborine Mountain, particularly Geoff Baldwin, and the Tamborine Times, I found Dennis William Trinder, died 1979, 6 feet 5 in his stocking feet, a man who smoked and drank like a fish, who looked like the man in the photos I had. An Englishman in Australia, almost exactly half the world away from where he had lived with Mary, and her two sons.

I went to meet Geoff Baldwin, and chatted in a pub in London over several too many drinks. “So, he must have had lipomatitis?” I said, confidently, showing him my lumps.

“Nope,” said Geoff. “No lipomatitis at all.”

Australia is a hot country. He wore string vests a lot, apparently. But Geoff didn’t remember him having any lipomas at all, let alone lipomatits. In men, this is a disfiguring illness, I thought. There’s no way, no way on the earth that he wouldn’t have noticed, living in Australia. I rationalised it, and thought, well, he must just not be very observant. But it nagged at me.

Then Patricia, my father’s first cousin, generously and graciously sent me a photograph album made by my grandmother. It had a ton of photos in of Dennis, in the war, with his son, with Mary, on the beach, on holiday. I didn’t put two and two together. They nagged at me too though.

You will have noticed it already. Dennis doesn’t have lipoma on his forearms. Not a one. Not anywhere. My fathers father had lipomas. So that must mean…

Now, remember I loved my grandmother. She was uncompromising, and I think she was probably easier to be a granddaughter to than a son, all things considered, but I did look up to her. I have her toughness, her skills in the kitchen at bottling, canning, cooking, baking. I’m naughty like her. We both have something hard in us, like “biting on tinfoil,” as Stephen King would put it (although I put more effort into gentleness than she ever did – but then, she survived more). We are both survivors. We are both caretakers, if slightly uncompromising, fierce ones. There must be another explanation, I thought. Because if Dennis isn’t my grandfather, then my grandmother not only did the dirty on him, but took it to her grave.

I sought alternative explanations for all the facts. Maybe it’s that this version of lipomatitis is not dominant, I thought. I looked for evidence that the disorder could be recessive. It can be – but these cases are so vanishingly rare that the lumps tend to appear “out of nowhere,” with the parents not knowing they are carriers. This is not the case in my family’s inheritance patterns. There are, for example, no cases of lipomatitis on my mother’s side, but I have them. The pattern for the inheritance in my family is autosomal dominant – which means that my grandfather has lipomatitis.

What if, I thought, Dennis hadn’t yet developed the lumps in the pictures, and also Geoff Baldwin and Dennis’ other friends from Tamborine Mountain who knew him later in life were just… dramatically unobservant. Could that be true? Well, there are pictures of Dennis’ trunk and forearms in 1944, when he was 27, clearly showing that he didn’t have lipomas. Lipomatitis starts in late puberty, and continues throughout life. By 27, I had obvious and visible lipomas. Dennis is a man, and if he had lipomatitis, they would be present in the photos.

Like a good researcher, I reached for Occam’s razor. If Dennis doesn’t have lumps, then he can’t be my father’s father. What evidence did I have to back this up, or refute it? For a start, my uncle remembers seeing my grandmother in bed with a man who wasn’t Dennis, around the time my father was conceived. Additionally, my father reported receiving a card from “uncle Den” on his birthday and Christmases for a few years after Dennis left. And then there was the issue of height.

There are complicated ways of predicting the height of a child. One of the most accurate is the mid parental height method. It’s explained here. It’s a handy calculator, which will tell you what height your own children are likely to be. In this case, it gave me a predicted height for my father, if Dennis and Mary are his parents. It also told me that 96% of people will fall between 8.5cm below this height, and 8.5cm above.

Dennis was 6’5, that’s 195cm tall. Mary was around 5’3, that’s 160m. My father claims he is 5’8, which is 176cm, but he has been shorter than me since before I’d finished growing by a good half inch. So, I’m going to go with the facts and then be generous and say he’s 169cm. If you don’t believe me, here’s photographic evidence – I’m 171cm on the far right, and my father is not 176cm on the far left. I’ll go with 195cm for Dennis, 160cm for Mary, and 169 for my father.

According to the calculator, my father should be 184cm tall. That’s just short of six feet. Instead he is (slightly) short of 5’8 *coughs* at 169cm. Even if we allow that’s 5’7, then he’s missing 14cm in height.

In fact, for his predicted height to be the same as his actual height (169), his mother would have to be 130cm tall. That’s 10cm shorter than the official height for a dwarf, at slightly over 4 feet tall. If you don’t believe this, you can play with the calculator yourself, the link is here.

Right, I thought. Let’s assume that I’ve made a bunch of errors and they are all in the same direction (making his parents taller, and my father shorter). It’s possible that Dennis lied slightly about his height, making himself even taller and more imposing than he might be. Even though his military record records his height at 6’5, and everybody remembers that height, I could shrink him to 6’4, surely. And Mary may also have been shorter than everybody remembered. I’m certain she was over five feet, and that she wasn’t that much shorter than my mother, but I thought I could shrink her to 5’2 in good conscience – to give her the benefit of the doubt. And though it pains me to say it, it’s possible that my father did shrink somewhat and that when he was younger, he was 5’8.

That (highly unlikely) set of changes to heights to save my grandmother’s reputation gives a paternal height of 193cm a maternal height of 156cm, and an actual child height of 176cm. What does the calculator say?

The calculator says that the offspring should be 181cm. That’s still north of the fictional 176cm, but it’s within the range of 8.5cm either side of 181cm (where 96% of the population lies). The problem is that it is a fiction. My father is not 5’8, he’s not even 5’7. Mary was not 5’2, not by a long shot. And Dennis’ army records make him 6’5. There’s no realistic way to look at parental heights and conclude that the child of Dennis and Mary should be 5’7. Indeed, their older son easily tops six feet.

The other problem I had with the idea that Dennis might not be my grandfather is that Dennis looks so much like my father that it’s uncanny. There are photographs of my father, clean shaven, which could be mistaken for Dennis. The resemblance is so complete that it seemed ridiculous to suggest that Dennis was not his father – no matter what the lipomatitis suggested.

Eventually, I talked in a general way to a family member – I can’t remember which one – maybe Louise, or Patricia? to try to put out feelers about the lipomas. Did Dennis have lipomatitis?

“No,” came the reply. “He never had anything like that. His brother, Geoffrey, was the one with the lipomatitis.”

Geoffrey was also about 6’1. And if Geoffrey was the father, there was a very easy explanation for why my father looked like Dennis, if Dennis couldn’t possibly be the father; Simon looked like Dennis because Dennis was Simon’s uncle.

Geoffrey had married Myra Ridding in early 1948, in the West Riding of Yorkshire. Their child, Kenneth, was born in Manchester in summer 1949. My father was born in Leeds in the autumn on 1949 in Leeds. If Geoffrey is the father, he would have been well within reach of Mary. He was a signatory on Mary and Dennis’ wedding certificate, in the West Riding of Yorkshire (Hemsworth) in 1940. Throughout the years between 1939 and 1945, Mary is present in many pictures at William Thomas Trinder’s house, along with her husband. The possibility was there.

To be honest and clear about the evidence, I am certain beyond a reasonable doubt that Dennis William Trinder was not my father’s father, based on the heritability of limpomatitis alone. I would bet the farm on it. I am also certain that the father would be around 6’1, would have lipomatitis, and would have spent time with Mary in 1949, and would have had some sort of family resemblance to Dennis (there’s no other way to explain how alike Dennis and my father look, as Dennis is definitely not my grandfather). I know that Geoffrey fits that description, and I know that the list of “tall men with lipomatitis who bear a resemblance to Dennis, with whom my grandmother likely spent time in early 1949” is a list that very probably only contains Geoffrey.

DNA tests may not even confirm it – tests would need to be done on as many offspring of both brothers as possible, but because they are brothers it is possible that it would still come back “inconclusive.”

If Geoffrey is the father, his second wife, and his brothers wife, would both have been carrying his children at the same time.

Click here to find out more about what Dennis did in the war, and afterwards.