Bringing It All Together

June 12, 2009

By: Mark Dunning 

Now it's time to pull the discussions in the last three posts back together with the discussions at the May 12th Conference. First, I feel pretty confident that I hit the middle ground in laying out the various management options for the hearing loss aspect of Usher syndrome. I know this because I got passionate e-mails from folks on all sides asking me how I could or could not advocate for or against each particular option. To be clear, I am not advocating any option, only that all options be discussed openly and honestly with families. Still, it's great to see such passion and it helps illustrate the point these last few posts.

We need to identify all types of Usher syndrome as early as possible for the sake of the families. 

The choice to sign or not to sign is highly emotional and very difficult to make. Further still, each choice has a better chance of success if it is made as early in the life of the child as possible. In fact, most language development occurs in the first five years of life. So it's no surprise that Auditory Verbal Therapy is more successful the earlier a child is implanted or gets hearing aids. A child needs sound if they are going to learn to listen, after all, which is one of the tenets of AV Therapy. Likewise, total communication is by definition a bridge to spoken language. The longer one waits to build that bridge, the worse the results. And ASL is a language that is unfamiliar to many families when their child is diagnosed. So parents not only have to teach it to their child, they also have to learn it themselves.

Parents are under the gun to make difficult decisions from the moment their child is diagnosed
with hearing loss. Do you choose a cochlear implant or ASL? Do you choose AV or total communication? Each of these decisions has a profound effect on the future of a child. The decisions effect their social life, their education, and their happiness. And each of these decisions might be dramatically effected were the parent to also know that the child had Usher syndrome and their vision was at risk.

In the May 12th conference there was a lot of discussion around screening and early diagnosis. Now, it's been awhile since earlier posts on the conference. You can still go back and read them, but let me review them for a moment.

First, we are struggling to develop a screening program for Usher families because we simply don't know what Usher looks like in young kids. We don't know this because Usher kids are not being identified at a young age because we don't have a screening program. It's a chicken and egg problem and it's stunting the development of therapies for vision loss.

In the second post about the conference, we talked about the impact of the diagnosis on families. It is emotionally devastating, especially coming as it does on the heels of a hearing loss diagnosis which on it's own can be crippling. The diagnosis is so difficult for families, that many physicians question whether it is ethical to even tell families about the diagnosis without acceptable treatments to offer. Grant organizations tend to agree. And there lies the problem.

We need to identify kids at as young an age as possible to be able to develop therapies AND, as we just spent the last three posts discussing, to give families as much time as possible to make the proper decisions around hearing loss therapies. But we can't develop adequate screening programs without adequate funding and grant organizations are unwilling to provide funding for early diagnosis when, in their eyes, the diagnosis is too devastating for families given that there are no treatments.

So all those postings and all that time spent in the conference leads us to this: We need to develop a compelling message for why early diagnosis is important. We need a message for the families so that they can properly make decisions on hearing loss therapy. We need it for physicians so they understand the importance of early diagnosis on the emotional well being of the family. And we need it for the grant organizations so they understand why it is important to fund screening programs. So that's what the next few post will be all about.

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