Kennedys Disease Community
New Here...My dad has Kennedy's disease...have questions??

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https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/627109673

02-21-2010, 08:13 PM
Alicia
New Here...My dad has Kennedy's disease...have questions??
Ok, My dad was diagnosed 3 1/2 yrs ago after a misdiagnosis of a rare form of MD for 25 yrs. Anyways, from what i read, as the daughter, I have 100% chance of being a carrier. What do i need to know? Do carriers have symptoms? Thanks for all the help!!
02-22-2010, 05:00 PM
Stan
Alicia,

First, thank you for visiting the site. This is a question that is asked frequently.

As an individual with KD and from my experiences, the best advice I can give you is to sit down and have this discussion with your parents and your doctors. My wife and I did this with our three children (two daughters) so that we all knew what was going on and what to expect.

To answer your other questions, here is what I copied from the KD Home Page heading on Genetic Counseling/Inheritance.

"If the father is the only carrier of the defective gene your chances of passing the defective gene to a male child are 0 %. However, it is 100 % certain that you would pass this gene on to your female child, and she will be a carrier of the gene.

Note: Females are usually ONLY carriers with no symptoms. However, it is not unheard of for females to develop symptoms as well. Although, these symptoms are usually not as severe as in males."

Hope this helps
04-07-2010, 08:30 PM
Lori Ryan-Salopek
When my dad passed away I found out that he has KD. Years before that, my voice left me after a trauma. Other things were going wrong, too. Doctors looked at me and said oh you have something rare like (fill in the blank). I quickly tested and tah-dah! KD. I knew this stuff was not in my head or various muscles. Just knowing took a bunch of stress off of me. Most things I have learned from this site, then I relay info to docs. My doc has MD so at the very least knows meds that help with NMD's. I want to know is there one facility that I could go to & test EVERYTHING that doctors want from me. I hate dealing with several docs and wasting time. I would love to do just one or two days and test what needs to be tested. Keep informed through this site it is a true Godsend!! You are welcome to ask me questions related to female KD. Maybe we can help each other.