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
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.
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.
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.
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☺️
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?
It maybe the other way round!
nature.com/articles/s41380-...
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:
olivopontocerebellar-atrophy
You might find this interesting. Symptoms are similar to PSP, yet is genetic and very rare in nature.
we have psp in our family for sure. My grandmother dies of it at 64 her brother in his fifties. A sister in later age. Her mother her grandmother. The brother that dies in his fifties had three children. One was diagnosed in her 40s dies at 50 another diagnosed in late 50’s died early 60s
Out of my dad and his four siblings is to be unknown. One sister died at 53 from 3 strokes. The other sister 64 of a heart attack. My uncle is near death at 64 with lung cancer. My father is the oldest turning 69 never drank coffee smoked or nothing. He has lung disease and ibm etc. nothing deadly yet. And one mor baby bro the youngest is the same with lung disease but otherwise healthy.
I would love to offer my family for research! We are perfect for it! Not to mention I’m 35 and experiencing so
E pretty scary symptoms but my family doctor does not take me seriously because of my age 😢 I would love to know what I can do to take care of myself.
PSP Support Dublin
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