Is SAH hereditary?

[rachelashby]

When I googled SAH after Mum died it came up with five “factors” being High Blood Pressure (which she had), High Cholesterol (which she probably had), smoking (which she did), being a woman and family history.

Now mum has no family history of this as far as we know but im concerned for my niece who now has had her father and grandmother have a SAH. Should she be screened? Would they do this on the NHS?

[rachelashby]

I would also like to say that my Aunt asked her GP about it who told her that it isn’t hereditary and that basically my Mum was a ticking timebomb....

[shricthism]

Hi Rachel, it seems that 1/100 people are walking around with an aneurism in their brain and will never know anything about it. There is no way of telling which ones will rupture and which ones will not. Even if someone knew they had one the risks of treatment would be similar to, or even greater than, the risk of rupture, so there is no point in screening. The genetic link is unknown at present, and a large UK project is underway to try and identify one if it exists - see this link

Hope this helps a little

Chris

PS, if you think of something after you have posted, you can always go back and edit the post ( like I did with this PS!)

Edited April 19, 2013 by shricthism

[Super Mario]

Hi Rachel, my son and daughter were both screened on the NHS after my SAH and they were all clear. The GP can do the referral to a neurologist for your niece. It will be her choice whether she wants to be screened or not.

[Winb143]

My Dads sister had a brain op when I was a little girl and her son (my cousin ) died of similar thing.

My parents never had Brain injury/SAH, Dad was 92 when he passed away.

So guess it is in my family but not my parents.

Good luck

WinB143 xx My aim is to live longer than my Dad lol xx

Edited April 19, 2013 by Winb143

[goldfish.girl]

Hi Rachel,

I think the answer may depend on the consultant you ask. My auntie and myself have both had SAH but the surgeon who operated on me said they wouldn't screen my children unless there were 2 first degree relatives affected by SAH. However, my sister was offered screening (in a different part of the UK) and my older son has also been told he can be screened but has chosen not to for now.

I think the issue is that sometimes they can find something that they may not be able to treat or that is too risky to treat & obviously that would be a difficult situation to face. I'm pleased to see there is a study being done on this & am going to have a peep at the link above.

Michelle x

[shricthism]

There is an interesting article here from the BMJ which says that analysis of incidence of SAH shows that first degree relatives of someone with an SAH have a 3 to 5 times risk of having an SAH compared with the average person. Remember though that the average is 7/100,000 so at 3 to 5 times that much its still a very small risk.

[Skippy]

Hey there

I was concerned for my daughter too after I had my SAH - both Doc and neurosurgeon advised me that unless two direct family members had suffered then it being hereditary was highly unlikely (no one else in my family has ever had a SAH). It may be worth asking if she can screened but, as already mentioned, it would be her choice if she wanted to should she be able.

[victoria conway]

I was asked to take part in the UCL study as I have an inherited condition called Ehlers Danloss Syndrome and they are interested in that and a possible correlation with SAH. I gave an armful of my blood and answered a lot of questions but will never hear of any outcome! My son and one of my grand-daughters have acquired the same syndrome through me - in my grand-daughter's case rather severely. So, after my own SAH - I asked my consultant whether he thought they should be scanned for aneurysms and, after a while, he wrote back to me essentially saying they should take it up with their own doctors but that, in any case, no-one would know what to do if they did find anything on scanning them.

The Ehlers Danloss is interesting. Looking back on family history (it passed to me through my own father), I can see some of the symptoms in one of my siblings but it is much more pronounced in me. Likewise, in my father's family, one of my aunts was afflicted more than any of her other siblings. She died suddenly of a "stroke" (possibly SAH) at almost exactly the same age as I suffered mine! We are very similar in size (a scrape over 5' and tiny with it) with almost constant joint problems - I can dislocate a thumb just by placing it in the wrong place on the steering wheel which is a pain in more than one sense of the word! The effect of the syndrome results from a defect in collagen - one of the building blocks of all sorts of things in the body. So - I am prepared to believe that there may some correlation between that and the existence of aneurysms. But what causes them to rupture, I have no idea. Certainly, when my SAH occurred, there was no apparent reason. Just going about my normal business and scanning my emails when the wretched idiot with the frying pan came up and hit me over the head!

Sorry - I'm rambling - tend to do that now. The point I'm trying to make in response to this thread is that SAH in itself may not be hereditary - but there may be other conditions which are that give a predisposition to its occurrence.

Anyone else have this syndrome?

Victoria

PS I found this site about a month after I had the SAH and, for one reason or another - mainly trying to persuade myself I should be better - have not been back until now - 21 months after it. I has been a comfort to come back and see that I am not the only one still going through the effort of recovery and dealing with the issues of mobility, balance (they call all this loss of "proprioception" for me) - and the entirely wretched constant buzzing in my ears. Not to mention the DVLA - but all government departments = total frustration. DWP, HMRC - all of them, heartless.

[Louise]

As far as I know there is no-one in my family that has had a SAH or anything to do with the brain so I wouldnt know which side of the family this was on.

I was told it was just one of those things.

[EmmaF]

Hi Rachel

I don't often log in to this forum but did so earlier today. I spotted your post and thought I would share my family's experience.

The first I heard about SAH was in May 2003 when my older sister had a ruptured SAH aged 29 (she survived and has made a complete recovery but 3 other unruptured aneurysms were found). We asked at the time whether there was any genetic link and whether I should be screened. At that time we were told that the most likely cause was the fact she was a smoker and, whilst in a small number of cases SAH seems to run in families, it's very rare and not to worry about it.

In Feb 2007, another of my sister's aneurysms ruptured. Again she survived and has made a complete recovery. At that time we asked for confirmation of what we were told previously and were told the analysis was the same.

In Dec 2011, I collapsed (embarrassingly at the darts) and had a seizure. Fortunately, I was with my husband and he had a feeling he knew what it was, the ambulance people took his concerns seriously and took me to the Royal Free where my ruptured SAH was diagnosed quickly. I was transferred to the National Hospital and had my aneurysm coiled within 48 hours. I was 32 at the time and have also made a complete recovery. I had never smoked, wasn't overweight and had always had average BP.

This time the hospital were concerned to know if we had any other siblings. We don't but, if we had, they would have recommended screening for them. We asked whether our parents should be screened but were told they should be okay as it was probably our specific gene pool that caused this issue for me and my sister.

In September 2012, my Dad suffered a SAH aged 68. Given his age (and the fact he's smoked for such a long period of his life) his bleed was much larger than that of either me or my sister. He survived the bleed but has suffered significant loss of speech and mobility. However, he's now home and receiving therapy and making good progress on both his speech and mobility.

Given there clearly is a genetic link in my family in respect of SAH my uncle (Dad's only brother) and his children are getting themselves screened but we don't yet know the outcome of this.

Neither my sister or I have children (yet - I'm pregnant with my first ) - but have been told that when baby reaches adulthood they should be screened too. The chances are my husband's gene pool will have diluted the impact of this for our baby but we'll take no chances with this. Hopefully in 18 years time their knowledge of this possible genetic link will have advanced significantly.

In conclusion, they know that in some cases a genetic link exists but they're not sure why or for how many people. As one of the other replies said, an alarmingly high number of people are walking around with unruptured aneurysms. In the vast majority of cases, the aneurysm will never rupture, but some of us have a predisposition towards this. This predisposition does seem to run in certain families.

There is some research going on currently to try and work out what the link is - we have taken part in this trial - so hopefully at some point they'll know with more certainty what the link is.

My only advice would be, if you/your niece, is worried ask the question of the consultant who treated your Mum. In my experience GPs have limited knowledge of SAH and will give the same sort of response you've heard but the specialists tend to take your concerns more seriously. If they consider your niece (or others in your family) to be at risk based on your family history, they may well recommend further screening on the NHS - it may also be available as part of a research project.

Sorry, this is a particularly long ramble (!) but I hope it is of some help to you and your family.

Emma x