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I need resources for primary progressive receptive aphasia patient.

By February 11, 2011 - 11:49pm
 
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My 24 yr. old daughter was just diagnosed with Primary Progressive Receptive Aphasia, frontal temporal region. The neurologist told us it was genetic and very rare.
Are there any resources out there for young victims of this? So far all I've been able to locate is information for stroke or injury victims and for people aged 60+.
Thank you,
Pim

Add a Comment5 Comments

EmpowHER Guest
Anonymous

Hello Pim, My name is Sherry, i live in odessa tx. My son is 31 yrs old and has PPA. he was diagnosed at age 19.his language center is wiped out,the disease.i have read everything i can find on PPA.i can tell you what my son has been through and what we both continue to go through.my email is sherryhawthorne51@gmail.

September 27, 2012 - 12:33pm
EmpowHER Guest
Anonymous

Hi Pim,

You can find more information about PPA (Primary Progressive Aphasia) here: http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html

This includes a list of professionals and caregivers that you can contact for more information and support.

Good luck!

Amy :)

February 15, 2011 - 8:44am
(reply to Anonymous)

Thank you for your response. I've been pouring over that site and have found it useful. Unfortunately, it has little info on genetically caused Primary Progressive Receptive Aphasia. I'm going to continue to read everything I can find on that site, as well as others.
Pim

February 16, 2011 - 12:50am

Hi Pim!

I think It's great that you are trying to find other young men/women for your daughter!
Can you tell us where you and your daughter are located so that we can best find a group location?

Thanks!

February 14, 2011 - 6:41am
(reply to Rosa Cabrera RN)

Rosa,
Thank you for your response. We are located in Henderson, in So. Nevada, near Las Vegas.

February 16, 2011 - 12:47am
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