We have been told several times that PSP is NOT hereditary but recently more and more people are coming forward and saying they have two family members (blood related) who have/had PSP.
Is there anyone on here who has/had two or more 'blood relations' with PSP? Or does anyone know if the research has brought up any new information on this?
Nobody else in my mum`s big family had it apart from my mum, however my dad had motor neurone disease and I wonder whether environmental or external factors may have triggered these neurological diseases in both of them, has anyone heard of whether there are any areas where these diseases are more frequent?
Hi Gayly, thank you for replying .... some people have said there are clusters but then no link but others have said there are environmental links - I think we are all desperate to find a link but not sure what. I came across four families (after asking the same question somewhere else) who have more than one family member with PSP ...... scary! x
I BELIEVE MY MUM HAD IT - AS ALTHOUGH IT WAS NEVER DXD - I RECOGNISE THE SYMPTOMS IN MYSELF EVEN DOWN TO THE INABILITY TO SWALLOW AT THE END
Thank you for replying Shasha ..... you are the second person in a couple of days who has had a similar experience .... it was a mother and son, the mother had the same symptoms but died in 1992 when even less was known about PSP. x
my mum passed away in 2007 aged 93 - she had all the usual symptims for about 2/3 years befire she died INCLUDING THE FALLING OVER A LOT - ALSO SHE ENDED UP IN THE LAST 2 WEEKS NOT BEING ABLE TO SWALLOW - WHICH IS VERY DISTRESSING - I THINK THAT THE HOME WHERE SHE WAS JUST THOUGHT THAT SHE WAS OLD BUT I AM CONVINCED THAT SHE HAD PSP
That is quite sad Sasha but on a more positive note more and more people are becoming aware of PSP/CBD and people's attitudes are changing - the more they learn the more they understand and the more help will become available. I wish you all the very best with your journey - and hope treatment/cure are found very very soon x
I think that until diagnosis is more reliable through lifetime testing we will not be sure but in my opinion I am thinking that PSP is very much under diagnosed. Those with no families watching them for example could sail through to an untimely end without ever being diagnosed.
Thank you Daughterno1 for replying - I agree completely, PSP is massively undiagnosed and the healthcare professionals themselves often have never heard of it - that in itself is a major battle letalone trying to get some quality treatment. x
Hi Tree_Hugger
Since PSP was recognised (1963/4) as a separate neurological condition from Parkinson's, there has been both scientific papers and personal communications that indicate there is about 1% of all cases of PSP that can be classified as hereditary.
For example a Spanish family had autosomal dominant PSP (a mutation on Chromosome 1). Other literature describe similar families with "familial" form of PSP. Occasionally, such families pop up on forums like CurePSP (a USA site).
A genetic area on chromosome 17 encodes a variant protein ( MAPT-tau protein) and this is often mentioned in medical papers, that occurs in 95% PSP patients - but it also occurs in 77% controls, so it's not considered a direct hereditary factor. Other new genes (3 of them) in PSP sufferers have been found in the last year or two that may have a part to play in PSP pathology, but it's early days to know their significance.
All this simply shows that while there is a very small hereditary aspect to PSP, it is still believed PSP is purely sporadic (No dominant or recessive patterns in most PSP sufferers). The jury is still out with respect to whether genetic susceptability is due to toxins or viruses or whatever.
If we do look at our families for possible hereditary signs, I think we only need to consider those neurological diseases with tauopathies (damaged tau protein) - mainly - PSP, CBD, FrontoTemporal Dementia, Pick's disease, Alzheimer's, postencephalitic Parkinson's.
Hope this helps.
Thank you so much Strelley, this information is most interesting - I do now recall the 1% being mentioned before but it had slipped my mind recently. There are more and more questions being asked each day by people who are desperate to find a cure and by those who have seen PSP/CBD etc at their worst and are terrified that they too may get these awful diseases. I for one would do anything to help in anyway I can, at the moment that just seems to be asking questions on other people's behalf's and passing the information back - all information gratefully received x
Hi Strelley I see you have mentioned FrontoTemporal Dementia & I noted genetic info on the site I visited. Both my brothers had/have bipolar and now a niece has been recently diagnosed with it. She is not a daughter of either of these 2 - seems we have poor genetic makeup Marytea13
My grandmother was undiagnosed as psp (people just assumed she had something similar to Alzheimer) but since my father has been formally diagnosed as suffering from psp, we recognise extremely similar symptoms, in particular near complete loss of speech and motor control, but also depression, loss of sleep, mood swings...
My father had a very healthy lifestyle no drinking no smoking, but has always suffered from depression. Could there be a link with the lack of dopamine?
PSP - swallowing questions
Chronic wasting and PSP
Heart issues with PSP
Alternative treatments for PSP
PSP - 'shudders/shakes' advice?
