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Friday, July 16, 2010

All You Need to Know About the Usher Syndrome and Related Disorders Conference, Part II: Psychosocial Aspects

by Mark Dunning

Yikes. I’m way behind on posts. I will respond to Jennifer’s last post soon. First, a quick update on the Usher Syndrome Family Conference held last weekend in Seattle Washington. In a word: Awesome. Some of the leading experts in the world spoke and they all did so at a level that was possible to follow even for the recently diagnosed. They were great. It was also terrific to see so many Usher adults in attendance. We quite literally emptied Seattle of interpreters for the day and it was mesmerizing to watch so many communicating using sign language and tactile sign. Bella has pretty much dropped sign at this point, so I had to knock off a lot of rust but I held my own (mostly I signed ‘Wait.  I don't understand.  Where’s an interpreter?’)

In the evening we held a cookout at a waterfront park. The weather could not have cooperated more. It was 90 degrees and dry. We had a nicely shaded reserved section with a dozen picnic tables and a large percentage of the conference participants came. Families got to mingle with each other and with many of the speakers, who also came for burgers and hot dogs. There were a dozen kids around the age of my kids there. Miraculously they all seemed to get along well. So well, in fact, that I had to drag my kids out of there.

All in all it was a terrific day and the organizers, particular Hear See Hope, Seattle Children’s Hospital, The Decibels Foundation, and the Coalition for Usher Syndrome Research, are to be commended. I’m already getting inquiries about next year. We’ll be working out those details soon so watch this space.

OK, now back to one of many unfinished topics. I have already given a summary of the first session of the Usher Syndrome and Related Disorders Conference held in Spain back in May. Here is a summary of the second session. Keep in mind this is still just the afternoon of day one, so more will follow (assuming I ever get my act together).

State of the art clinical and genetic diagnosis and early intervention in Usher syndrome
Claes Moller
Orebro University Hospital, Orebro, Sweden

Thanks to newborn hearing screening and vestibular testing, the folks in Sweden are getting pretty good at diagnosing Usher 1. However, Usher 2 and 3 patients are still very difficult to identify at a young age without genetic testing because of the absence of early balance issues. Now that it’s been several weeks, I can’t remember if Sweden is doing regular genetic testing of kids that fail the newborn hearing screen or not, but I do know that Dr. Moller feels it is the best way to find Usher 2 and 3 kids at a young age.

Why you care

There may not be a person in the world that knows Usher syndrome better than Dr. Moller and even he is finding it hard to diagnose Usher 2 and 3 at a young age without a genetic test. Early diagnosis remains critical because there is so much that can be done, from hearing aids and cochlear implants to sunglasses and dietary changes, all of which are more beneficial when done early. If you have a child with hearing loss and don’t know the cause, early genetic testing is a good idea.

Psychosocial impact of Usher syndrome: Adults and the family
Ilene Miner
Licensed Social Worker, Venice, California

More than 100 people with Usher were interviewed over many years and then an additional 10 in Denmark and 12 in the United States. The study found a number of similarities between countries but in all cases Usher syndrome has a significant psychosocial impact throughout life. In particular both groups, Danes and Americans, suffered consequences from having Usher that included job loss, depression, and problems with family relationships. There was a difference in that Danes had significantly more access to services than people with Usher in America and that had an impact on their ability to have contact with others and socialize.

Why you care

Well, if you want to have a social life or you want your child to have a social life, you care. The study showed that more services meant more opportunities for social interaction. It seems pretty clear that we in the United States need to fight for more services for people with Usher.

Usher syndrome and psychosocial health
Berth Danermark
Orebro University Hospital, Orebro, Sweden

This was a study of 96 persons with Usher type II and 16 persons with Usher type III in Sweden. The participants filled in a questionnaire through a national public health survey, so the results could be compared to those from the general population. The goal was to study psychosocial factors that promote health. It was not good news. People with Usher were more likely to have depression, anxiety, sleeping disorders, low self esteem, and thoughts of suicide than the general Swedish population.

Why you care

This is the stuff that scares people. It’s not the blindness or the deafness or the balance problems. It’s the social isolation and the psychological problems that go with it. I talk a lot about treatments for the physical ailments but we need to treat the social and emotional impact of Usher as well. Expect more discussion about this in future posts.

How do people with Usher syndrome live their lives?
Ole Mortensen and Bettina Moller
Information Center for Acquired Deafblindness, Denmark

Over a five year period, “The Nordic Project” interviewed 20 people with Usher in Scandinavian countries. The interviews were conducted once a year and focused on how the participants lived day to day, not just on their problems. The hope is that some knowledge can be gained that can be helpful in developing social supports for people with Usher.

Why you care

Seems sort of silly to have to discuss this, huh? I mean, many readers of this blog have Usher or a family member with Usher and live a life every day. But for researchers who don’t live the life, this is an important topic. They need to know about how Usher actually impacts the daily lives of their patients and research subjects if they want to know if treatments are improving those lives. And, quite frankly, for families this matters too. Just see my post on my first deafblind party to get an idea of how foreign living with Usher can be even for someone who, like me, lives with Usher every day.

So that gets us through most of day one of the symposium. From here on, it gets pretty technical which means two things: 1) I’ll be soliciting Jennifer’s help and 2) my descriptions will be much shorter.

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