Crowdsourcing Hearing Info

The Mayo Clinic, in collaboration with the Hearing Loss Association of America (#HLAA) and the Ida Institute, an independent non-profit organization that promotes hearing health, has established an online forum where you can find support, answers to specific questions, share experiences and even gripe if you feel like it.

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The forum is monitored by Mayo Clinic staff as well as volunteer mentors, and this oversight should help keep the discussions civil and the information credible. I’ve been following it for the past couple of weeks and I’ve found a lot of interesting information, and a lot of people whose hearing-loss experiences help put my own in perspective.

To join the group:

Go to https://connect.mayoclinic.org/group/hearing-loss/.Click on the “Join” button at the top, create a user name (you can use a nickname or a first name plus @ — for instance Katherine@), enter your email address and follow the prompts.

Anyone can read the discussions, whether or not you join, but if you want to initiate a topic or comment on an existing discussion, you’ll need to fill in information in the section titled “Introduce Yourself.”

An online forum is not a substitute for an in-person support group. Whether you are new to hearing loss or a veteran of hearing loss, you might benefit from joining an HLAA or ALDA (Association of Late Deafened Adults) chapter near you. But I also recommend joining this forum. You can learn from the discussions and also contribute to others’ knowledge.

(If you think you’ve already read this post, you’re right! It was published in a longer form a few weeks ago. Now that I’ve had a chance to read the discussions over a few weeks, I thought it was worth another post. Please share your experiences.)

4 thoughts on “Crowdsourcing Hearing Info

  1. Katherine, I tried this, but was suddenly getting daily emails with long lists of all of the Mayo Clinic’s groups and concerts, etc. I may have signed on wrong. I tried emailing them, unsuccessfully. I finally unsubscribed. Have to run now. Death in the family. Best, Karen

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    • You can limit notifications so that you get only the hearing loss forum, and only once a day or once a week — or not at all. I have found the hearing loss comments quite interesting but, like everyone, I don’t want my in-box clogged with notifications. I fixed it easily (but I didn’t remember how). I’m sorry about your family loss.

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  2. I signed up when you first suggested it and have found it to be helpful, may look into having a cochlear implant evaluation as I do need help. Some years ago I found a breast cancer web site that helped me get through a bad time by sharing what others were experiencing. Thanks for all your good recommendations!

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