Psp testing

[Beckany]

Hi. I lost my mum in october to this horrible illness. I'm still struggling with this. What I would like to know is there any test to see if I carry the gene. Thank you.

[OllieFisher1]

I don't believe there is from the research I have done. Best lesson learned is to consider when and how you may need to prepare to be able to live the best life possible if such a disease was to come your way.

[LuisRodicioRodicio]

Hi Beckany!

PSP diseases are believed to have a genetic cause which is not inherited, with the possible very rare exceptions. Familial diseases are inherited diseases. Only 5% of all cases of PSP are familial

I play a comment from Kevin_1 (08-2019):

“PSP and CBD are not inherited. There was one small study that thought it identified 'clusters' of families who had a higher than the normal rate of this group of illnesses. However even their study showed that it was exceptionally rare and it was a pilot study with all of the inherent accuracy issues which such small studies suffer.

The research is very clear, It is not an inherritted condition.”

Hug and luck.

Luis

[Beckany in reply to LuisRodicioRodicio]

The only reason is my mum and her brother died within a few weeks of each other with psp.

[REOC]

I am trying to find out about this as someone I know was offered genetic testing (her mum had psp) but I haven’t been - I think it’s something to do with the tau gene. I am asking my doctor about it and she’s trying to find out so will post if I discover anything (this is in the uk)

[Beckany in reply to REOC]

Thank you reoc. I'm in the uk. It's hard enough trying to find a doctor that has heard of psp. Both my mum and her brother passed away within weeks of each other with psp. I seem to be going down the same way with illness like mum did and I am constantly worrying about psp.

[Kayelless in reply to REOC]

I had genetic testing so my daughter could know if it might come her way. Nothing there according to results. We both were very relieved.

[REOC in reply to Kayelless]

hi Kayelless, do you know the name of the test you had? My sister has sjogrens and didn’t know that was related, potentially.

[Kayelless in reply to REOC]

this is a test processed in the US that looks at several genes for problems. It doesn’t tell if you have PSP but it rules out other possibilities that could be passed down. So although it didn’t say anything about PSP we knew my daughter and her future children didn’t have to be concerned those other issues that were ruled out.

[Red1990]

A resource to share with your doctor when considering:

Centogene.com

[Abrecheisen53]

Hi Beckany,

First, let me say how sorry I am for your loss. My husband passed two years ago from PSP. It is the most challenging journey I have ever experienced.

After John passed, we donated his brain to the Brain Bank. The autopsy revealed John had 100% PSP. Patients may often have a blend of other FTD neurological symptoms, which is why it's hard to diagnose. PSP patients produce an overabundance of Tau Protein that grow, gnarl, and block various brain pathways/functions like forgetting to blink, swallow, etc.

I am unaware that it is something inherited, but I have learned never to say never -they may not know it yet. I know on John's side of the family; they have several neurological problems - Alzheimer's, Sjogren's, and Parkinson's - whereas mine has cancer-related chiefly illnesses. Who knows A very informative website is CurePSP.org. No matter where you live, you should be able to access it. This site was a godsend for surviving the day-to-day with your loved ones, but CurePSP is also a terrific reference website. They also have zoom grief support groups that I found extremely helpful.

I would also like to suggest, even though I know this is very hard, please fight, request, and plead to have PSP stated as the cause of death on your loved ones death certificate. PSP is underreported and und erfunded. Bruce Willis has brought attention to FTD, which PSP is under that umbrella, and hopefully will get attention to your cause. Maybe someday we will learn more and perhaps even find a cure.

Strength and courage to you and your family, Alice

[Troubleandstrife]

I have always heard that psp is not genetic. It’s awful, and curious this happens to your mother and uncle in the same timeframe. I’m sorry. I would be inclined to question what potential toxin your mom and her brother may have both been exposed to as toxins are one of the suspected causes.

[martinjanetj123 in reply to Troubleandstrife]

my partner has PSP and his mother also had PSP. He has provided blood samples to check if there is any genetic cause

[Kelmisty]

I am going to live now as if it might happen in the future, whilst as children of these sufferers there is no guarantee that we would or wouldn’t develop it in the future, there is also no guarantee we will reach the part of life where we could develop it.

Can you get some access to grief counselling, after this trauma you may find it helpful to process your grief.

X

[easterncedar]

one odd risk factor: consumption of soursop fruit. Many years ago there was a woman on this site who had lost both parents to PSP, and it was thought, as they were from the Caribbean, that that might have been the cause.