Monday, November 26, 2012

The Power of Social Networking to Link Patients with Medical Professionals

For four years, I have been speaking at Medical Conferences to share our experience with Jordan's hearing loss, but recently a different type of conference has been spontaneously popping up as an initiative linked to the Italian forum I created three years ago.
What is currently happening in Italy is that Medical professionals involved in hearing loss are attending conferences sponsored by Parent Associations throughout Italy. These medical professionals are sharing their knowledge at these meetings without receiving credits or payment, because they believe in what we have created. And they are listening to what we as parents and ci recipients have to say about the journey and a variety of different experiences.

The collaboration is resulting in a network of families, recipients and professionals that results in quicker contact, more resources and pressure on the CI companies to create better products quicker. The more we as families are informed, the greater our demands become.

Five years ago we decided to basically make our life public to try to help other families in our same situation. Yesterday, a mom stopped me to tell me that when her daughter was diagnosed at two years of age, she surfed the internet for information and found a video of Jordan talking about his ci. She said listening to him talk gave her hope. Her daughter is now four years old and has bilateral cochlear implants- she's doing amazing. Five years ago, we created a community of ci bloggers. I met Aiden's mom Tammy along the way, and yesterday I talked about their journey and a comment she made: there are three groups of people I always encourage families new to this journey to find - those who walked before them, those who walk hand in hand with them, and then when the time comes, those who walk behind them. 

During the lunch break, the mother of a forty year old with profound hearing loss pulled me aside to thank me for my presentation. She said forty years ago, no one spoke openly about disability and she had had no one to help her in her journey. The father of a forty-three year old bilaterally implanted after 40 years of hearing aids said the same thing. Their children were labeled led a restrictive life due to prejudice and discrimination. No one talked about disability other than to say, "There's the Deaf child".

Times have changed. 
Times are still changing. 
Raising our children's voices begins with our ability to raise our own collective voice, which is becoming stronger.
The critical moment when we start raising our voice begins on the playground when a curious child walks up to you and says, "Hey, what are those things in your child's ears?"
And you respond.


Stephen said...

The journey continues! Another amazing blog!

Anonymous said...

I usually do not comment, however I looked at through a few responses on
this page "The Power of Social Networking to Link Patients with Medical Professionals".
I do have 2 questions for you if it's allright. Could it be only me or do some of these comments look as if they are written by brain dead individuals? :-P And, if you are writing at additional sites, I'd like
to follow anything fresh you have to post. Could you list of every one of all your social community pages like your twitter feed, Facebook page or linkedin profile?
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