Thursday, December 22, 2011

Sorry, Mr. Southerland

Earlier this year, Phil Southerland of Team Type 1, an athlete who fundraises for diabetes research and to provide supplies to diabetics in third world countries, published a book Not Dead Yet: My Race Against Disease From Diagnosis to Dominance. I had heard enough about Southerland that when I saw the book in the popular library section at Harold Washington, I picked it up and took a look.
But the first few pages made me decide that I did not want to read the book, because in those first few pages, Southerland, who was diagnosed with type 1 diabetes at the age of seven months, makes the claim that at the time of his diagnosis, he was the youngest person ever diagnosed with type 1 diabetes. I was pretty sure that he was wrong.

Phil Southerland was diagnosed with diabetes around 1980. The first report written of a child below the age of seven months who had diabetes was written in 1852, by the child's father, who was a physician. The child had neonatal diabetes and died. An even earlier report, in 1789, was written about an older baby with diabetes, who also died. Before insulin, there were a number of reports of infants who died of diabetes as well as at least a few reports of infants with transient neonatal diabetes who survived without diabetes. I am not sure when the first case of a surviving infant with permanant type 1 diabetes happened, but the first case I have access to was in 1952 (some articles earlier than that I have only the titles of describe "infants under the age of one year" which might or might not have been under seven months). was diagnosed at the age of 17 days and the article was written when she was 8 months old, at which time she was getting four shots of insulin per day. The article is A Case of Congenital Diabetes.

Although it could be argued that neonatal diabetes is not really what Southerland means because maybe by type 1 he means autoimmune type 1 only. Autoimmune diabetes truly generally does take months to develop. And infants with permanant neonatal diabetes do have some different features- for instance they are rarely ketotic. However, I can easily locate articles from the 1950s about babies diagnosed between the ages of 1 and 2 months who were in ketoacidosis. One baby was given 250 units of insulin before his ketoacidosis cleared up (from reading the article it sounds like they lowered his blood sugar way too fast).

Antibody levels have never been routinely measured in children diagnosed at very early ages at the majority of hospitals, and in any case a baby at seven months can easily have a false positive antibody test (due to antibodies from the mother) so it's hard to know who the youngest antibody positive baby diagnosed with diabetes was in 1980. In any case, there's no real reason to think that an antibody negative baby with an inability to make insulin is any less of a type 1 diabetic than an antibody positive baby with the same inability.

I wanted to write this post because Southerland's statement really rankled. It struck me as extremely similar to the posturing done by Thomas Beatty, a transgender man who appeared on Opera and other public places to show off his pregnancy. So, okay, he wants to be very public and say that he's different because he's a pregnant transman- fine. But that wasn't enough- he had to claim to be the very first pregnant transman, a statement that was absolutely categorically false and had nothing true about it. He was not the first pregnant transman, he was not the first transman to take testosterone, go off testosterone, and have a baby, and he was not the first person to give birth wearing a hospital bracelet that said M. And I knew that because I had made my final choice to go ahead and take testosterone after I met a transman with a three year old son who had gone off testosterone in order to get pregnant himself, and I knew of a number of other such cases. And everytime I see somebody from a group that the public has lots of misperceptions about- such as type 1 diabetics, or transgender people- get up and claim to be the only one of something where it would be easy to find others, it really pisses me off.

P.S. Looking for a follow up to the case I linked to above, I found that in fact the girl's diabetes was not the same as the classical type 1- her diabetes went into remission when she was about one and a half years old and when she was 40 years old, was still in remission. However, the article with the follow up also includes the case of a baby born in 1957 diagnosed at age 28 days who had stayed alive and on insulin for thirty six years of follow up. The article is Long Term Course of Neonatal Diabetes


Scott S said...

Thanks for sharing; there have been several statements made by Mr, Southerland that make for nice headlines, but aren't always substantiated by facts, the one you mention being one of them. This isn't to dismiss his accomplishments, but the title "Diagnosis to Dominance" remains to be seen. Phil is still quite young and likely manages his disease well. But a percentage (and I can't recall the actual number) of people will go on to develop so-called diabetes complications in spite of terrific, text-book management. In fact, there are some studies that indicate that some forms of neuropathy and even cardiovascular disease may have at least a partial autoimmune basis, and the people who suffer from this may not be "responsible" for their complications. From my perspective, he can be congratulated for getting a publishing deal, but I don't find his book's premise terribly compelling unless I check it out at the library.

Anonymous said...

Thank you Jonah for calling out Sutherland on at least one of his numerous fabrications. Nice to see that at least a few people see through the phony. Is there a lawsuit pending regarding his unsubstantiated "facts"? If not, there should be.