I've been remiss and haven't posted here for quite a while. Life and other stuff (like the stuff I make!) have gotten in the way. But always I come back to the issue of Ushers Syndrome - because it affects my life through my daughters. They are both amazing women with fulfilling lives who seem to deal well with their condition(s). It takes just an incident or posting on FB or blog posting or conference call to bring the whole thing home again - for me! But I don't live it EVERY single day of my life. I admire my girls and all those who have vision and/or hearing issues - for the struggles they most often endure silently every single day of their lives.
I listened on Monday to a conference call/visual presentation by Heidi Rehm of the Harvard Medical School, on the "Why's" of genetic testing for Usher Syndrome, the reasons for the cost, and the time it takes to secure the results. Is it worthwhile? Absolutely! Very costly, yes! But just today I was alerted to a new research study approved by the FDA for US Type 1b. So that means that it is very important to KNOW what type of US one has - to be able to be included in the study. We know that our daughters have Type 2, but we DON'T know which one. It will be important to know in order to be able to avail themselves of studies down the road.
So much has transpired in the world of genetics for US in the last 22 years since Roberta's diagnosis. Progress comes slowly, but there is hope, and I always want to hold onto that.
Then I read on FB of Roberta's mishap at school and was devastated for her. No long-lasting physical ill-effects but the emotional ones wear on and on. It hurts so much when a mom can't FIX what hurts!
And this morning I caught up on my reading of DoubleVisionBlog, in which twins are undergoing an unusual Eastern medicine treatment for RP, and so far the results are outstanding. And scary! And so well-written. Fear of hope is explored as well as some details of this extraordinary treatment process. I urge you to read it if you have any interest at all in RP (retinitis pigmentosa).
Let there be hope - as fearful as that is!
