Thursday, September 24, 2009

Men and Autoimmune Disease

Image by lhumble


The time has come to admit that we are not an exclusively female club. It's time to let the guys into our autoimmune tree house, boy cooties and all.

While it is true that the ratio of women to men is 9:1 for Sjogren's syndrome and SLE, a recent report published in September 2009 by the Annals of Internal Medicine spurred interest in AIs in men after it was revealed that John F. Kennedy dealt with significant health issues stemming from autoimmune disease:

At the age of 43 years, John F. Kennedy was the youngest man ever elected president. Throughout both his campaign and hispresidency, he was portrayed as the epitome of youth and vigor. In fact, he had the most complex medical history of anyone to occupy the White House. The recent opening of his White House medical records has provided researchers greater insight into the multiple medical conditions that afflicted Kennedy. A recent review of these records, coupled with other available sources, allows new understanding of his health history that can now be explained in the context of a unifying autoimmune endocrine disorder.

.......In summary, John F. Kennedy had many medical conditions during his lifetime. Addison disease was diagnosed when Kennedy was 30 years of age, and he was found to have hypothyroidism when he was a senator. The coexistence of autoimmune adrenal disease and hypothyroidism is consistent with APS 2......Despite his many medical conditions as well as his recurrent back problems, John F. Kennedy managed to convey an image of health and vigor that masked the true state of his health to the U.S. public.

John F. Kennedy may have had autoimmune polyendocrine syndrome type 2, or APS2, which may include Addison's disease and hypothyroidism among other problems. You can read more about APS2 here.

While APS2 is relatively rare, other autoimmune diseases found in men are not. Note the ratio of male/female in ulcerative colitis, diabetes mellitus, and myocarditis in the graph below.

Graph above found here, from the CDC.

Why are autoimmune diseases so sharply divided between the sexes? This remains a very difficult question and the definitive answer has yet to be found. This National Women's Health Resource article offers a few explanations, most based on sex hormonal differences between men and women:

Most researchers agree on one thing: sex hormones must be involved. For instance, symptoms of multiple sclerosis and rheumatoid arthritis tend to improve during pregnancy, when levels of estrogen and progesterone are high. They also tend to improve when women take oral contraceptives, which moderate hormone fluctuations.2Autoimmune thyroid disease also may improve during pregnancy, then flare after delivery as postpartum thyroiditis.

Lupus, however, might sometimes flare during pregnancy while some other autoimmune diseases show no hormone-related disease changes.2

Another theory suggests that fetal cells from earlier pregnancies that remain in a woman's blood for years after giving birth may play a role in some diseases, particularly those that first develop or get worse after pregnancy.2

We also know that many immune cells have receptors for sex hormones, says Dr. Whitacre. When hormones bind, or attach, to these immune cells, they can affect the cell's behavior. In fact, women tend to have a stronger inflammatory immune response than men, and inflammation is a key component of many autoimmune diseases.2

"So it's that very close relationship with hormones that provides a clue that they play a big role in autoimmune diseases," says Dr. Whitacre.

Regardless of cause, what is undeniable is that significant numbers of men also face enormous challenges as a result of their autoimmune diseases.

How many? According to the American Diabetes Association, of the 23.5 million people who have diabetes, now thought to have an autoimmune cause, 12 million are men. The National Digestive Diseases Information Clearinghouse estimated in 2001, 408 cases of ulcerative colitis and Crohn's disease occurred per 100,000 people in the United States, approximately half of which were men. These numbers reflect only two AI diseases, and only in the United States, just a small sliver of the world's population.

So even though women do largely outnumber men in most other areas of autoimmune disease, the fact remains that men do experience all AIs, which should be a reminder to us all: Everyone struggling with these difficult diseases deserves support, education, and the right to be treated with dignity.

Got that girls?

Now be nice. To everyone.


Crabcakes said...

Interesting post! Dr. Gerald Callahan, in "Faith, Madness, and Spontaneous Human Combustion: What Immunology Can Teach Us About Self-Perception" postulates that small numbers of men retain maternal cells, from the womb, and these are the men that are more affected by AI. It is known that the feto-maternal circularoty system shares cells, and he beleives some male fetuses retain enough female/maternal cells to provoke autoimmune disease. Very interesting book! I JUST finished it.

Julia Oleinik said...

I'll have to look into reading Dr. Callahan's book - thanks for the info.

The concept of retained maternal cells in - men and women - is explained really well in another book, "The Autoimmune Connection: Essential Information For Women On Diagnosis, Treatment, And Getting On With Your Life", by Rita Baron-Faust and Jill P. Buyon, M.D. You may enjoy reading this book as well.

Anonymous said...

A man here weighing in. I think there are more of us than they say. I think that men are less likely to seek out help with the ailments and thus tend to struggle through on their own and not ask for help. Its the not asking for directions syndrome.

Julia Oleinik said...

Hi Steven -

Good point. There's no doubt that men problem solve (or not) medical issues differently than women. We solved the "not stopping for directions" dilemma at our house by getting a GPS. Wouldn't it be nice for us all if there were a similar device for illnesses?

All kidding aside, I have heard from several other men who deal with Sjogren's syndrome. They all have had exceptional amounts of difficulty getting a diagnosis once they have resolved to get help because, "oh, Sjs is a woman's disease" mentality in their health care providers.

Russell Moris said...
This comment has been removed by a blog administrator.
Anonymous said...

I am a male with sjogren's Syndrome. Diagnosed withn it in 10/2009 and I have been struggling with nerve pain since March of 2009. The AARDA.ORG website indicates that: "While nearly 75 percent of the more than 23.5 million Americans who suffer from autoimmune disease are women, millions of American men suffer from these diseases, too. However, autoimmune diseases that develop in men tend to be more severe." My Rheumatologist agrees with this too. He says that his male patients with Lupus and Sjogren's usually have one symptom that is very severe and troubling whereas his female patients have many symptoms that are minor. However, AI diseases affects each person differently. See

Anonymous said...

Meant to say that I have been struggling with the nerve pain since March of 2011 not 2009. AI diseases are terrible as they are so unpredicatable and the immunosuppressant drugs are scary. I am going in for Rituxan infusion on Dec 12th and 26th to help slow the progression of the nerve damage. I am scared.

Julia Oleinik said...

Anonymous: Wow. I'm sorry you're having such difficulties right now. Please keep me posted as to how you respond to the Rituxan and how you are faring overall!

Mayweather said...

In my opinion the relative propensity of women to have autoimmune diseases like sjogren's is driven by evolution and epigenetics.

Epigenetic protein makeup changes throughout our lives in response to disease, personal habits and environment. We pass our epigenetic proteins on to our children at conception. The epigenetic protein makeup of the ova women pass along is written stone at puberty. The epigenetic protein makeup of the sperm which men pass along changes throughout life.

Autoimmune disease is a response to antigens, mostly ingested antigens. Autoimmune responses get coded into epigenetic proteins. The propensity to get autoimmune disease is age related. The older we get the more likely we are to get autoimmune disease. However, because of the above factors young children can inherit the propensity for autoimmune disease from their parents epigenetically.

Probably through interaction with testosterone evolution has made men more resistant to certain autoimmune diseases in order to reduce the likelihood of passing it on to succeeding generations.