2018 February 28th – Kennedy’s Disease – Cost/Benefit Just Not There
Good news is my wife and her coworker found a disease that I match a bunch of symptoms for. Bad news is the genetic test for it is out of reach.
See https://www.kennedysdisease.org/.
The problem is that it is a rare untreatable genetic disease with an expensive price tag.
Women are carriers (I have 1 brother and 6 sisters, and 3 daughters). Only men have symptoms. It would affect my grandchildren. Up the ancestry, my father could have it, but then it goes beyond time.
It is progressive, but doesn’t shorten your life span.
Think on that last statement, and the implications of that. Seems like Hell on Earth.
I have a new thin-line Bible coming in today. God must be my guide. It is in Him that I derive my peace and strength.
In Christ,
Jay C. “Jazzy_J” Theriot
Hi Jay. I am a KD Patient and run an online support group on FB. To clarify, males cannot pass it down to their sons. We do pass it down to our daughters 100% of the time. If you do have KD, it was passed on to you from your mother and she could have gotten the gene from either parent. If it was You grandfather, and you mom had sisters, then all of the females would be carriers and the males would have a 50/50 chance of having KD. Also, often times we are misdiagnosed by physicians to have ALS. Fortunately, KD is a consolation diagnosis. The progression is slow and many patients are still walking unassisted into their 70’s.
Fred, Thanks. This makes since. My genealogy is composed mostly of women, ascending and descending.
Currently, my diagnosis is that I am a genetic anomaly. We did look at ALS and MS, as well as several others. Everything we looked at was disqualified.
My wife is a bull dog when it comes to working the insurance/medical connection and it does look like I may get the test.
My ability level is very fluid. I do very well in the morning and degrade through the day. I’m going to have to look up the FB support group.
Thanks again. I hope to find you.
Jay