Susan Perlman, MD, discusses the psychological impact of Friedreich’s ataxia on patients and how healthcare providers can support them.

Any healthcare provider dealing with a chronic, incurable illness in a patient has to be aware that there are going to be psychological reactions to it and also in the family of the affected person. Depression, anxiety, withdrawing from social activities, doing things that undermine quality of life and put stress on other family members.

So, you know, I think it’s important in all settings to, you know — somebody comes in, find out how they’re feeling, find out if they’re having problems, you know, with mood or problems with anxiety, which can be reasonably treated with medications that are widely available, and also counseling and psychological support.

But the first problem is recognizing that these things can go along with a physical illness.

Some neurologic disorders do cause primary problems in mood and thinking. We think of, you know, patients with Huntington’s disease who can have prominent psychiatric issues as well as mood and behavioral issues, which need to be dealt with with a psychiatrist or other qualified professional.

But certainly, you know, people who are grappling to come to terms with an incurable disease — and Friedreich’s is currently an incurable disease — that will reduce their quality of life and reduce their perspective on future goals. You know, we need to be supportive in any way that we can by educating them, by standing up for them. If we’re going to be requiring some kind of counseling, let’s do our best to make sure they can get it.

And then when appropriate, referring — especially a youngster, where suicidal risk could be higher in the adolescent population — into an appropriate mental healthcare professional.