Tuesday, November 8, 2011


I am a member of many wonderful online support groups for Usher Syndrome.

And as of late a few of these groups have members that have said or done something that has upset me.

In one group, I had a lady tell me and my sister that we didn't have Usher Syndrome, it must be some sort of other 'mutation' that presents its self as Ushers...(WTF??) she then asked if I know about the genetics involved with the eye condition...to which I responded of course...but not in a nice way.
I'm sorry, but I know what I have, I remember all the testing we had to find out, and I've done a lot of research and asked a lot of Doctors A LOT of questions!
After speaking with another friend who has had previous dealings with the Crazy Lady, I learned that my sister and I were not the first people she had said that too. Apparently this women seems to think she is some kind of an expert on Usher and likes to tell other people she does not think that they have it...only her kid has it.
Do you hear the alarm bells going off too? This women is dangerous! I don't even know her name!
What baffles me the most was that I had never talked to this women before, she just happened to be in the same support group. Needless to say at the advice of my friend I got out of the group.

There were some things said and done in another group I am a member of, which I will stay a member of because there is really good information sharing on it otherwise. BUT...

I feel that those of us that have Usher Syndrome need to stick together! We are a small 'community' of people and there are not very many of us. We need to support each other, we need to share out frustrations, goals and accomplishments! If one person with Usher goes out there and tries to rise awareness - no matter who or where they are - we need to cheer them on! It benefits all of us in the end!
If one person with Usher Syndrome is mistreated for being deaf/blind or not getting the funding or support they need, we need to be there to help pick them up and keep them going...We need to support each other!
I don't know how much more I can stress that!
Yes, people have different personalities, different opinions, different outlooks, but we need to learn to express those differences in healthy way. Enough of the bickering and the stupid ass arguing over the STUPIDEST shit!


Lisa C said...

nice - three posts at once! I wonder if those people in areas of the world that have a greater concentration of Ushers don't understand how rare and isolating it is here in Canada?

JillyBean said...

I don't know! Its a good question, but I'm getting sick of all the bickering

coombsy said...

Hang in there babe xo