Multiple Family Members with PSP - PSP Association

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Multiple Family Members with PSP

YoungPSP
YoungPSP

Does anyone else have multiple family members with PSP? My grandfather was diagnosed with Parkinson’s but looking back it was probably PSP, my father has been diagnosed with probable PSP and I am currently being diagnosed with possible/probable MSA and my son has an autism diagnosis. I am told that PSP is not genetic however my family history indicates differently.

Thanks

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I have never read that these diseases are hereditary. Not much is known on how they get started but there has been some discussion on the possibility of environmental issues having an affect.

Ron

Hi

Currently the accepted view is that PSP is not hereditary.

However a small study done in the States indicated that there was a possibility of some families having an inherited disposition. It also indicated the possibility of there being some geographical clusters, but that too is uncertain.

The study was far too small to do more than indicate further study is needed in this area.

Sorry, not very useful, but I think this info. is still up to date.

Best

Kevin

I agree with Kevin and i believe it has to start some where either in families or environment that we are exposed to. I’m sorry you have to go thru this.

My husband had PSP and his first cousin died of PSP, we was also told that my husbands mum had the same symptoms as my husband, weird isn’t it x

My son died of PSP 2017. He was 55 years old. His father died of FTD (often claimed as PSP) 2002. He was 65.

The question of heredity of PSP comes up on this site from time to time.

rarediseases.info.nih.gov/d...

I have little experience with copying web sites on here, but if you GOOGLE "nih gard" you will get helpful information.

"PSP is usually sporadic but some cases run in families...in most cases the genetic cause is unknown but some are due to mutations or variations in the MAPT gene."

There is not enough research yet completed to answer your question

My personal philosophy is that since there is PRESENTLY no preventative treatment FOR PSP.......... WHY spend precious time worrying about what the future can bring? I have a 57 year old daughter, and so I don't give that advice in a vacuum.

Personally, I do believe there is a hereditary component, however Genetics is no longer confined to a simple dominant/recessive gene. It is much more complicated.

Eventually science research will some up with more information.

Margarita, Los Angeles, CA, USA

I also believe that there is some hereditary link as my lovely Steve had PSP and I am convinced that his mother also had it, she died many years ago and supposedly had Parkinson’s but the more I hear about it from Steve’s remaining family the more convinced I am that it was PSP. There is also another brother who also supposedly had Parkinson’s but nobody is in proper contact with him so don’t know if we will ever know exactly what is wrong there. But how can all these family cases just be by chance? I think it needs investigating again, there is still so much that is unknown about these conditions.

Like everyone else, I've read that it is not hereditary. In my family's case there is not any hint of a neurodegenerative disease at all on either parents side. Not even Parkinson's or Alzheimer's. I am the first. But I am also the first on either side to have Crohn's Disease as well. Their are now 2 others from my mother's lineage that have Crohn's. In our case it may be that if you smoked, you died of cancer in your 60's or early 70's. Just as PSP would have been taking hold. There have been many smokers, my parents included. Non smokers lived until their mid to upper 90's.

All that said, the only way to be sure a family member had PSP is through brain donation. There are many other disorders that can mimic PSP.

Laurel54
Laurel54 in reply to Railfan

I have a dear friend with PSP who has also suffered from Crohn’s since her thirties (she is now in her seventies). Wonder if there is any connection between the two.

Railfan
Railfan in reply to Laurel54

Crohn's Disease is an autoimmune disease. Your immune system gets turned on and can't stop itself. Eventually it attacks your body. It's thought of by most people as a bowel disease but can also affect your mouth, eyes, lungs, veins, arteries, bladder, kidneys, pancreas and brain stem. The inflammation can be seen with a simple blood test in most cases.

PSP is a Tauopathy. Normal Tau proteins in the brain stem become misshapen and begin to affect others around them. This causes a clumping of Tau that damages neurons and other brain cells. This clumping of damaged cells in the brain shows as Neurofibrilary Tangles on autopsy.

aliciamq
aliciamq in reply to Railfan

My husband's mother had Alzheimers, also a tauopathy, and we had a severely brain damaged child with a convulsive disorder, who lived until he was 30. Yesterday was his 50th birthday - Joshua Paul☺️

YoungPSP
YoungPSP in reply to aliciamq

Thank you for responding, having one family member suffer is so difficult but when multiple members suffer you begin to wonder how much more you can take. I am so very sorry to hear about your son, I struggled immensely when our son was diagnosed with autism but I can not imagine losing a child. You are obviously a very strong, amazing individual.

God Bless

Could inflammation in the brain stem lead to the misshapen proteins?

kafunzi123
kafunzi123 in reply to Laurel54

It maybe the other way round!

nature.com/articles/s41380-...

kafunzi123

Laurel54
Laurel54 in reply to kafunzi123

Thanks for the link. Much of the article flew waaay over my head, but I get the general idea. Interestingly, my mother had a history of major depressions, as well as mania, and in her later years she developed what was then (early 1990s) diagnosed as “atypical Parkinson’s,” which I now believe was PSP.

It seems this effort would appreciate your family's participation:

ftdregistry.org/?utm_campai...

olivopontocerebellar-atrophy

You might find this interesting. Symptoms are similar to PSP, yet is genetic and very rare in nature.

rarediseases.info.nih.gov/d...

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