Dear All - Thank you again for providing this forum. It is a gift that has been invaluable to me. As I posted before, my sister (soon to be 66 yo), was diagnosed with Kennedy's disease in 2018 (via genetic testing/Penn Medicine). Because she also has Turner's syndrome, which means she only has one X chromosome, she has the phenotype of KD. Her progression has been super rapid....not at all consistent with what I have read on this site. I have been helping her with things (cleaning, shopping, cooking, laundry, etc) for the past 2 years. In that last 3 weeks, she was no longer able to get up from a chair or get out of bed, and she finally realized it was time to move to assisted living. So, I moved her last Thursday after mostly living with her the past 2 weeks. It is absolutely the right /safe thing for her, but when I left she just started sobbing inconsolably...just heartbreaking. She cried because she was leaving her home and because the disease is winning the fight.This is one tough disease. Prayers to all of you in this community.
Location: Brooklyn, NY
I am so sorry. Sending you both love and strength. Truly hoping things stabilize and start reversing for her.
Lilly, thank you for your prayers, and our prayers go to you and your sister in return.
She is truly blessed to have such a devoted sibling as you. Thank you for helping her.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614