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USH Ambassadors for Wisconsin- Pam and Shari

Pam Bilyeu

I’m so excited to join the Usher Syndrome Coalition in their mission to reach and engage as many people affected by Usher syndrome. For those of you familiar with the Green Bay Packers, I live only 30 minutes from the famed Lambeau Field!

Born in 1961, it was before all the wonderful tools available to screen hearing loss in infants. My 85db loss was not identified until I was in 2nd grade! I also had issues seeing in the dark as a kid, which was dismissed as ‘being afraid of the dark.’

My mother was my biggest advocate, insisting on hearing aids for me when being told they wouldn’t help. She made sure I had regular speech therapy and refused to send me to a ‘deaf school’ away from the family. She instead made sure I was mainstreamed. Once I adapted to hearing aids, I quickly caught up with my peers in school.

Her tenacity rubbed off on me in that I pushed to excel in school. Also, despite attempts not to allow me into nursing school, I proved I was up to the task. After a 20-plus year career in nursing, I was faced with a sudden vision decline. My ophthalmologist insisted I had a brain tumor or damage, rather than the possibility of Usher. Another doctor in his clinic was a former high school classmate of mine, who called me privately, urging me to go see Dr. Gerald Fishman, an Usher researcher at the University of Illinois. That is where I received my official diagnosis.

Fast forward 20 years, I changed careers. I am now a Medical Massage Therapist with my own clinic. I am currently matched with my 2nd guide dog, a handsome standard Poodle named Senator.

Since my diagnosis and progressing vision loss, I have always tried to pass along my experience and knowledge of Usher to those traveling the same journey - to help them navigate rehab services, get a guide dog, or choose a second career. Usher is not the end, it is just a fork in the road that leads to many other adventures.

I look forward to talking with those in my State to learn what their experience or agency can offer those with Usher. I also want to be a conduit for those with Usher, or a family member, to services and options to thrive.

Please feel free to reach out at any time for information or support. If I don’t have the answer, I hope to have the resources and information to pass along quickly!

Contact Pam: ambassador.wi@usher-syndrome.org

920-687-9999 (TEXT)

Shari Atchison

My name is Shari Atchison and I’m excited to be one of the WI ambassadors for the Usher Syndrome Coalition! I have Usher syndrome type 2a. I am a licensed massage therapist and I own my own business. I work with people who have stress, tension, and/or need pain relief.

Usher syndrome is an insidious disorder that progressively chips away at the corners of our vision, slowly affecting night vision, peripheral vision, depth perception, and color discrimination. Sometimes the hearing loss is steady or drops. Leading a stress-free life as much as possible helps maintain a better quality of life for those affected by Usher syndrome and/or life stressors. Living with Usher syndrome is frustrating and challenging. It helps when we know we are not alone and can reach out and find resources to help our journey with Usher syndrome. We are NOT alone! I’m happy to assist along that path and lessen the stress! 

You can also read my blog from the early days of living with Usher syndrome:http://literallyblindsided.blogspot.com/

 

Resources for Wisconsin

  • Program and services for youth and adults with combined vision and hearing loss.

  • Provides free telecommunication evaluation, equipment, and training to children and adults with significant vision and hearing loss who qualify. iCanConnect is a national program authorized under the National Deaf-Blind Equipment Distribution Program.

  • Improving services and support for children who are deafblind and their families resulting in increased participation in family, community and employment settings.

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