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Registered: 10-13-2017
Posts: 7
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Hi!
My name is Elvira and I live in Sweden. My father has Kennedys disease and me and my sister are carriers.
I have had years of difficulties with getting easily tired out in my muscles, exhaustion, muscleproblems in legs and arms when doing exercises or just climbing a stair or doing my hair.....etc etc. A DNA bloodtest showed that im over the "limit for developing symptoms" of Kennedys disease: 44 cags, 28 cags.
I talked to my neurologist and to Genetical centre in Lund Sweden. They all believe my problems are because of Kennedys, that im a carriers of, ...even though i will not develop the disease.

Anyone here who is a carrier of this disease who also have developed symptoms?
Or anyone who knows or have heard about women with problems from SBMA/Kennedys symptoms?
Best wishes
Elvira
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 190
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Elvira, in general women don't develop the symptoms of KD probably because their testosterone level tends to be only about 10% the level in men. However my mom developed strong symptoms of KD. She had elevated testosterone and became diabetic in her later years, both likely contributing factors.
Registered: 08-02-2009
Posts: 206
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Hello Elvira,

Please have a look at the past forum discussions, some of which were very detailed. For example:
"Women Carriers and Symptoms"
and
"Any females that have this?"
If you still have questions after reading those, please put them on this thread and we will try to help! Thanks.
Registered: 10-13-2017
Posts: 7
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Hi!
Thank you so much for your answers!
Im only 36 years old so in very young to develop these symptoms and very uncommon because like you say women mostly dont develope symptoms.
My neurologist said that one x chromosome can be more active than ones other x chromosome, one is then heterozygote woman. My "sick" x chromosome is more active than my health x.
Will check out the links!
Thanks again!
Best regards
Elvira
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Kennedy's Disease Association
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