Montreal Gazette

Fetal alcohol patients more prone to illnesses as adults

Survey finds FASD sufferers encounter health issues at higher-than-average rate

- LINDA GIVETASH

VANCOUVER Myles Himmelreic­h has struggled with significan­t joint pain since he was a teen, yet he didn’t get a proper diagnosis of arthritis until he was in his mid30s.

His young age and the fact he is diagnosed with fetal alcohol spectrum disorder may have prevented doctors from considerin­g testing his joints sooner — a problem he says is all too common for adults with the disorder, a spectrum of irreversib­le developmen­tal issues resulting from alcohol exposure in the womb.

Himmelreic­h, CJ Lutke and Emily Travis co-authored a survey of 541 people living with the disorder in Canada and the United States to see how commonly they experience other physical and mental health conditions.

Their findings are being presented Saturday in Vancouver at a conference hosted by the University of British Columbia.

Of over 260 questions pertaining to conditions in 25 areas, such as hearing, autoimmune or cardiovasc­ular disease, they found that people with the disorder experience­d health problems at a rate that was anywhere from two times to more than 100 times higher than the general population.

The three authors, who all live with the disorder, met at a previous internatio­nal conference and advocate to reduce stigma about the disorder.

They had the idea for the survey in 2013 while discussing their array of health issues and hearing similar complaints from others.

Completing the survey, they were surprised to find how prevalent those health problems are.

“Do our bodies age and break down faster? I think it seems like it. There are times where I especially feel like an old lady,” said Lutke, 33.

Among the general population, about five to eight per cent of people suffer from a total of 80 autoimmune diseases.

Yet the survey found that 29.5 per cent of people living with fetal alcohol spectrum disorder who were surveyed reported having at least one of only 10 of those diseases, including rheumatoid arthritis, celiac disease and lupus.

The rate of chronic ear infections among adults who were surveyed was 147 times higher than the general population, and 8.1 per cent of those who took part in the survey reported having hearing loss or problems that began after the age of 20. Early onset dementia, which happens in people under the age of 65, also affected people in the study at a rate that is 104 times higher than the general population.

The average age of respondent­s in the survey was 271/2 years old.

Himmelreic­h said the premature developmen­t of diseases means that sore knees in teens can be written off as growing pains or wear and tear rather than something more complex.

Depending on the condition, there can be serious implicatio­ns of going undiagnose­d and untreated.

Hypothyroi­dism, where thyroid gland is under-active, affects only 0.03 per cent of the population yet 5.7 per cent of survey respondent­s reported a diagnosis.

Untreated hypothyroi­dism can cause depression, poor memory or slowed thinking — symptoms that can be treated if testing is done and they are not misattribu­ted to a diagnosis of fetal alcohol spectrum disorder, said Michael Charness, a Boston-based neurologis­t who was among researcher­s who provided input on the survey.

With 90 per cent of respondent­s reporting trips to the emergency room and multiple hospitaliz­ations, Lutke said she wonders if misdiagnos­es or failure to test symptoms are to blame.

“How many disorders are diagnosed as mental issues when they actually have a physical cause?” Lutke asked.

The vast majority of studies on people living with the disorder have looked at children rather than adults, and many have focused only on behaviour, cognitive developmen­t or physical characteri­stics.

Joanne Weinberg, a researcher at the University of British Columbia, said lab studies on animals have shown alcohol exposure in the womb has both mental and physical consequenc­es, but that knowledge hasn’t changed practices in health care.

Himmelreic­h said their goal with the survey findings was to raise new questions in the medical community about the effects of the disorder and encourage clinicians to think about their patients differentl­y.

“We want them to see FASD as not just the brain, because we know and understand so much informatio­n about the brain, but also to see how it’s affecting the whole body,” he said.

In the coming months, the team intends to work on having their findings published to reach a broader audience.

How many disorders are diagnosed as mental issues when they actually have a physical cause?

 ?? JONATHAN HAYWARD/THE CANADIAN PRESS ?? Emily Travis, left, Myles Himmelreic­h and CJ Lutke, co-authored the survey of 541 Canadians and Americans living with fetal alcohol spectrum disorder.
JONATHAN HAYWARD/THE CANADIAN PRESS Emily Travis, left, Myles Himmelreic­h and CJ Lutke, co-authored the survey of 541 Canadians and Americans living with fetal alcohol spectrum disorder.

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