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England (Counties as in 1851-1901) => England => Cumberland => Topic started by: pearson on Friday 11 November 05 10:39 GMT (UK)

Title: Huntington's Chorea
Post by: pearson on Friday 11 November 05 10:39 GMT (UK)
Hi all
I am trying to trace back a disease in my family called Huntingtons chorea.
I have hit a dead end now WELLS family from Egremont had the disease maybe from mid 1800s later than that it must have come from a wife TWENTYMAN, WILD, GLAISTER?
It would be great to hear from any one who knows of the disease in their family that have come from the Whitehaven area of Cumberland.
Also any tips or help would be much appreciated.
Karen
Title: Re: Huntington's Chorea
Post by: Jones the Search on Friday 11 November 05 10:52 GMT (UK)
Found this site it may be of interest to you.

http://www.thesahara.net/huntingtons_disease.htm

Patricia
Title: Re: Huntington's Chorea
Post by: pearson on Friday 11 November 05 11:03 GMT (UK)
Patricia
Thanks for that. I don't want to sound rude but I am not looking for info on the disease. I know all I need to know as it is still in my family.
Thanks any way
Karen ;)
Title: Re: Huntington's Chorea
Post by: Jones the Search on Friday 11 November 05 13:38 GMT (UK)
Sorry. thought this link might have led you on further.
Patricia
Title: Re: Huntington's Chorea
Post by: loo on Friday 11 November 05 16:50 GMT (UK)
Perhaps there is a self-help organization, or other charity you or someone in your family could join, and learn about other families with this problem, and then you could trace them back and see if there's a connection.  It would be interesting to know how narrow the area would be where it first came from, or whether it came from several original places.
It's a longshot, but, if you're determined, it might get you somewhere. 
The only people I know of who had it were folksinger Woody Guthrie and, I believe, his son Arlo.  Arlo is still living.  I have no idea where they came from originally though.
Title: Re: Huntington's Chorea
Post by: JAP on Friday 11 November 05 23:55 GMT (UK)
Hello Karen,

Are you aware of the Rootsweb Huntington's list?

Click here for the Rootsweb list (http://lists.rootsweb.com/index/other/Medical_Genealogy/HUNTINGTON-DISEASE.html)

It does not seem to be particularly active but, if you have not already done so, it would probably be worth searching its archives and posting your own information.

Best regards,

JAP
Title: Re: Huntington's Chorea
Post by: terryc on Tuesday 16 January 07 13:29 GMT (UK)
I have WELLS from the Whitehaven area around 1850s on their way to Australia (Geelong VIC) but I do not know of any Huntington's Chorea in the family. An Elizabeth WELLS married into the Errey line, but the Erreys were famous for bad chests (perhaps too many cousin marriages).

I am not sure where exactly the WELLS/WILEY combo arose from in Cumberland at present. Just getting back to Cumberland from Australia was a major success.

I will keep this in mind and get back if anything crops up.
Title: Re: Huntington's Chorea
Post by: cass on Sunday 18 March 07 20:54 GMT (UK)
I don't know if it was in my family but I remember my mother talking to me as a child about 'St Vitus Dance' which I believe is another term for Huntingtons Chorea. I can't remember why she should be talking about it so maybe there was a family history. She came from Workinton. Cass
Title: Re: Huntington's Chorea
Post by: Subaru on Sunday 18 March 07 21:56 GMT (UK)
Woody Guthrie was born in Oklahoma.  He inherited Huntingtons from his mother who was born in Cansas.

I loved Alice's Restaurant (Arlo Guthrie), and have always called camper vans by "VW Microbus" like in the song.

I don't know anything about Huntingtons, apart from it is very rare.

Rosemary
Title: Re: Huntington's Chorea
Post by: bearkat on Sunday 18 March 07 22:03 GMT (UK)
I would think that medical researchers would have a database of families with Huntingdon's. 
Title: Re: Huntington's Chorea
Post by: anthony pearson on Thursday 05 November 09 22:20 GMT (UK)
hi
what is huntingdon's disease
i am a pearson member with johnston's from whitehaven
my pearson family come from cumbrland
Title: Re: Huntington's Chorea
Post by: emmsthheight on Saturday 07 November 09 00:53 GMT (UK)
Hi

This is a link to a paper which covers all sorts including some in depth descriptions of statistical tests used and information about the desease both of which you may either know already or not wish to know.

However it also gives some brief history back to Huntington publishing information on the desease.   Also more relevant to what you mention, some studies of the distribution of the desease in the world and within the UK and America, and links between the desease in the two countries.  

One main area is Suffolk but by no means unique.  Interestingly, one area mentioned for the desease in immigrants  is Ontario, and there was a huge influx of people from this area into Ontario.

This may just give ideas for where to look for more specific named information.

One thought, on looking for your family names, Ontario is very good at publishing genealogical information.  There are some large runs of death register indexes on the library edition of Ancestry.  I've used them for a large family group and you can view the actual death certificates which give causes of death and also the length of duration and institutions dealing with the patient.

A bit slow andnot easy reading, but you may find some of your family names.

If you can't find the other links in Whitehaven, they may have come in by ship from another area, as many did - Scotland, Ireland, Wales, South coast and mare as well as abroad.

Not quite what you need, but a bit more information.

I'll see what organisations I can see locally who may know.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1684448/pdf/ajhg00165-0014.pdf

Best wishes

Emms
Title: Re: Huntington's Chorea
Post by: emmsthheight on Saturday 07 November 09 01:09 GMT (UK)
Hi

A bit shorter than the last one, you'll be glad to hear!

This one suggests that Fletcher Christian (Who emigrated from this coast) and his expedition may be responsible for the desease spreading across the Atlantic!  There is a Pearson in the genealogy at the end.

  I'll have a good read of both articles tomorrow as they're both of interest.

The relevant bit starts part way down the page so I used edit and find on Huntington and Pearson.

Edited:  Whoops, no link!

Here it is!
http://www.rootschat.com/links/07fa/  (http://www.rootschat.com/links/07fa/)
Best wishes

Emms
Title: Re: Huntington's Chorea
Post by: gilyat on Sunday 17 January 10 14:11 GMT (UK)
To answer Anthony Pearson, what is Huntingtons Chorea...
All humans have the Huntingtin gene (HTT), which codes for the protein huntingtin (HTT). Part of this gene is a repeated section called a trinucleotide repeat, which varies in length between individuals and may change length between generations.
When the length of this repeated section reaches a certain threshold, it produces an altered form of the protein, called mutant huntingtin protein (mHTT). The differing functions of these proteins are the cause of pathological changes which in turn cause the disease symptoms.
The Huntington's disease mutation is genetically dominant, because either of a person's HTT genes being mutated, causes the disease. It is not inherited according to gender, but the length of the repeated section of the gene, and hence its severity, can be influenced by the gender of the affected parent.
There is no cure unless maybe in the distant future the DNA coding from this mutated gene, can be altered. This is where research is at with all mutated genes, the transcription of which, thro' its pathogenesis, results in these conditions.
Title: Re: Huntington's Chorea
Post by: Leeschof on Friday 25 August 17 15:33 BST (UK)
I see this is an old thread but i will reply anyway.
I have been researching my family as HD runs in my line too, i have family now in their 20s with HD, i have traced it back to the 1800's when many family died in asylums in their 40's clearly with HD as the strain in our family starts early and most die mid 40's.
If there is anything i can do to help please let me know.
Title: Re: Huntington's Chorea
Post by: elzabels on Saturday 26 August 17 23:43 BST (UK)
As an older thread no my info no longer relevant! It related to St Vitus Dance