family members: how many people have several... - Ataxia UK

Ataxia UK

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gossy profile image
18 Replies

how many people have several family members effected by ataxia in my family my late father had 3 sisters 1 brother as well as my brother and myself according to my neourligist thats very rare

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gossy profile image
gossy
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18 Replies
jurgen profile image
jurgen

Hello "gossy",

it´s not rare at all.

ask your doc to "google" hereditary ataxias:(SCA)

***************:

..Disease characteristics. The hereditary ataxias are a group of genetic disorders characterized by slowly progressive incoordination of gait and often associated with poor coordination of hands, speech, and eye movements. Frequently, atrophy of the cerebellum occurs. In this GeneReview the hereditary ataxias are categorized by mode of inheritance and gene in which causative mutations occur or chromosomal locus.

Diagnosis/testing. Inherited (genetic) forms of ataxia must be distinguished from the many acquired (non-genetic) causes of ataxia. The genetic forms of ataxia are diagnosed by family history, physical examination, neuroimaging, and molecular genetic testing.

Genetic counseling. The hereditary ataxias can be inherited in an autosomal dominant, autosomal recessive, or X-linked manner. Genetic counseling and risk assessment depend on determination of the specific cause of an inherited ataxia in an individual....

*******************

Regards

HarryB profile image
HarryBAdministrator in reply to jurgen

Hi Jurgen

I don't think gossy's neurologist was saying hereditary ataxia is very rare, rather the fact that so many people in gossy's family being affected is very rare. Please tell me if I am wrong gossy.

Harriet

jurgen profile image
jurgen in reply to HarryB

Hello Harry,

I felt since (hereditary) SCA is not known very well even by quite a few

neurologists [so I found] "gossy´s neurologist might well have

been one of those.

Regards

Magicalwomanz profile image
Magicalwomanz in reply to jurgen

Sca TYPE 6 IS rare 1 in 100,000 people have it in the world and less than 0.2% or maybe 2% Not Sure forgot .... have it in the UK so that IS rare x

Magicalwomanz profile image
Magicalwomanz in reply to jurgen

Epidemiology

The estimated worldwide prevalence of SCA6 is less than 1/100,000. It is most commonly seen in Japan, Korea, the Netherlands and Germany.

Magicalwomanz profile image
Magicalwomanz in reply to jurgen

How common is SCA6? The frequency of SCA6 varies considerably according to geographical area. For instance, SCA6 represents only about 2 percent of the cases of dominant spinocerebellar ataxia in Italy, but it has been shown to represent as high as 31 percent in Japan. In the United States, SCA6 represents about 15 percent of all cases of dominant hereditary ataxia. Overall, the prevalence of this disease is estimated at less than 1 in 100,000.

gossy profile image
gossy

thats right the fact so many of family affected

Razzy profile image
Razzy

There are quite a large number of ,My Family affected by the SCA6 Ataxia , my Father, Aunt, sister cousins myself my son, so I don't think it is that unusual if it is hereditary. and it may have been possible there were others who had the gene but passed on before they could be tested for it . I do think a lot of Neurologists and Doctors are now becoming more aware of the different Ataxias and are like many of us, surprised by how many people are Ataxians .

Magicalwomanz profile image
Magicalwomanz in reply to Razzy

Sca TYPE 6 IS rare 1 in 100,000 people have it in the world and less than 0.2% or maybe 2% Not Sure forgot .... have it in the UK so that IS rare x

Cathytw profile image
Cathytw

Hi in my family there have been quite a few with ataxia my nan had it my mum myself and brother have it plus a cousin

HarryB profile image
HarryBAdministrator in reply to Cathytw

Hi Cathy

Could I ask what type of ataxia you have?

Harriet

Cathytw profile image
Cathytw in reply to HarryB

Hi Harriet they have taken blood from my mum myself and brother but haven't said which one it is just cerebellar ataxia go to local hospital every 6 months neurologist doesn't see my mum anymore but he has seen my brother the neurologist also saw my mums sister and she has been diagnosed with it too but hers doesn't seem too bad at the moment what a family !!

wildone profile image
wildone

I have Friedreich's Ataxia. There is/has been noone in my family who has it, but both your parents have to at least be carriers of the gene thing (sorry for getting so technical!) that causes FA, so I suppose it's not too rare to be the only one in the family with it.

february profile image
february

No one in my family, as far back as we know, has/had ataxia, except me... ;o)

Magicalwomanz profile image
Magicalwomanz

Sca TYPE 6 IS rare 1 in 100,000 people have it in the world and less than 0.2% or maybe 2% Not Sure forgot .... have it in the UK so that IS rare x

Magicalwomanz profile image
Magicalwomanz

How common is SCA6? The frequency of SCA6 varies considerably according to geographical area. For instance, SCA6 represents only about 2 percent of the cases of dominant spinocerebellar ataxia in Italy, but it has been shown to represent as high as 31 percent in Japan. In the United States, SCA6 represents about 15 percent of all cases of dominant hereditary ataxia. Overall, the prevalence of this disease is estimated at less than 1 in 100,000.

Magicalwomanz profile image
Magicalwomanz

Epidemiology

The estimated worldwide prevalence of SCA6 is less than 1/100,000. It is most commonly seen in Japan, Korea, the Netherlands and Germany.

Magicalwomanz profile image
Magicalwomanz

Of course it is getting less rare as the years go on as more people have it due to births but also people pass away too who Have condition so percent doesn’t grow drastically x

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