4 First Cousins Diagnosed in a Year!: I was... - PMRGCAuk

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4 First Cousins Diagnosed in a Year!

Pmrmolly2018 profile image
22 Replies

I was diagnosed with PMR in June 2018. Since then, 2 first cousins (women), one a retired doctor, and now my sister who is 7 years younger than me aged 65, recently diagnosed with GCA and/or PMR. My aunt who died last year also had PMR in her 70’s. All part of the same genetic family.

Is this a coincidence; we have Northern European genetic links.

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Pmrmolly2018 profile image
Pmrmolly2018
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22 Replies
SheffieldJane profile image
SheffieldJane

I very much doubt that it is a coincidence. I am fairly sure that there is a genetic component in this, especially, as you say, there are the genetic links to Northern Europeans. I think my maternal granny had PMR but it was misdiagnosed.

That’s very interesting.......

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

No I don’t think it’s a coincidence- but certainly an unlucky family!

Have a look at this post - (slightly tongue in cheek, but based on facts) -

healthunlocked.com/pmrgcauk...

jinasc profile image
jinasc in reply to DorsetLady

Freya................from Hel..................telepathy!!!!!!!!!!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to jinasc

As ever......😉

scats profile image
scats

Welcome to the club. Father and all three children with PMR in our family.

I see Freya makes her presence felt again. Perhaps we should all wear a horned helmet at meetings

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to scats

What do you mean??

scats profile image
scats in reply to DorsetLady

Nothing disrepectful oh great godess. Perhaps a viking helmet as our logo, or a badge, to recognise our northern roots.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to scats

Could be arranged!!

Not sure as a “died in the wool” Southerner whether I approve though! 😂🤣😂 maybe I’d have to stick to my updated tiara 👑.

scats profile image
scats in reply to DorsetLady

Me too a soft southener, several generations in the same sussex village, at least two of them with PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to scats

Perhaps we’ll have to organise a Southern Chapter of Vikings then!!

alvertta profile image
alvertta

I have GCA. one Aunt and one cousins had PMR. genetics. All Icelanders.

PMRpro profile image
PMRproAmbassador

It's probably what is called a cluster - any given family like that will have common ancestry and Scandinavian genes increase the likelihood that all the other factors combined will trigger the autoimmune malfunction. Then if they had common environmental or other triggers that ups the chances too.

Clusters are also seen in places or temporally - several people diagnosed in the same village or within a few weeks. But they haven't managed to identify a common trigger as a result. It's the same genetically - it is a whole cluster of genes that are involved, not a small number which is what tends to happen if a disease is inherited.

But it does seem exceedingly bad luck!!!! Any men? My maternal grandfather and a maternal aunt but on her mother's side had PMR - but can't identify any more.

Mikb profile image
Mikb in reply to PMRpro

I recently found out that there are 2 people within walking distance of my house that have or had GCA.

PMRpro profile image
PMRproAmbassador in reply to Mikb

And I bet they also thought they were the only people in the region!

Mikb profile image
Mikb in reply to PMRpro

Our common denominator is my best friend who grew up next door to one of the ladies, and did the books of the other lady. Otherwise I wouldn’t have known.

PMRpro profile image
PMRproAmbassador in reply to Mikb

Such a shame isn't it - even if all you do is have a cup of tea together you can at least know they know what it is like! No explanations needed.

piglette profile image
piglette

They reckon it is 25% genetic and 75% environmental, which seems to be true.

Pmrmolly2018 profile image
Pmrmolly2018 in reply to piglette

Interestingly, each of the 4 are different ages ..65 - 76 and have grown up in completely different environments, cultures and life styles. My sister, yes, but other two no.

The Viking Link...well we are all blue/green eyed, 3 blond and me brunette, strong minded (!) and bossy......go getters! Hard to accept the limitations imposed by PMR.

piglette profile image
piglette in reply to Pmrmolly2018

I think when they say environmental they mean not genetic!

PMRpro profile image
PMRproAmbassador in reply to piglette

I mean ecological factors - "Ecology. the air, water, minerals, organisms, and all other external factors surrounding and affecting a given organism at any time."

Rimmy profile image
Rimmy

Myself and my mother (who was never diagnosed). At risk of 'boring' to tears or worrying extended family members I do mention this is a disease which (I have read anyway) 'tends to aggregate in families' which is just a less deterministic sounding version of probably 'genetic' or having genetic propensities ...

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