Researching possible hereditary illness

[Dubonnet lady]

On behalf of someone on another Forum, I am trying to find an answer to her question:

if a married couple has four children, the mother of the children then dies and the father marry's again and dis owns the children from the first marriage, the children grow up and have lives of their own but want to research their mothers illness.
would the husband of the first marriage still be next of kin and able to stop any such research being done?


She later goes on to explain that the man in question is, in fact, her father, who left the home 41 years ago, never speaking again to his children. Her mother was ill from when she (the writer) was 8 until she was 11. there is currently illness amongst her and her siblings so she is wondering if her mother's illness may throw some light on this.

She has (as someone suggested) contacted the hospital(s) she was in with no success because they do not have records from that long ago. The (then) GP is now dead.

There apparently was a Post Mortem - how could she access that - and could the father block permission to view.

I wondered if she could get enough detail from a Death Cert? - She doesn't know how to do that.

ANy ideas to offer her please?

[Helen Smith Too]

She can get the death certificate throught the GRO or through the local registrar. Shouldn't be any problem.
After getting that and finding the cause of death would be the time to look for a post-mortem report, but I think they are sealed for about 70 years - if they survive.

[Olde Crone Holden]

Don't forget that a death cert only gives the cause of death, which might not be related to any underlying illness.

For example, if someone is run over by a bus then the fact that they have had TB for two years will be irrelevant and possibly not mentioned on a death cert.

However, getting the death cert is the first thing to do. There may have been an inquest, in which case it should be easy to find a newspaper report of it. Most inquests made the local papers.

OC

[Dubonnet lady]

Thanks Helen and OC - I'll pass those on.;)

[Olde Crone Holden]

Just to clarify:

Post Mortems and Inquests are two separate things. An Inquest is in the public domain, but a post mortem is a medical examination of a technical nature and only of interest to other medical people.

I doubt very much if you could access post mortem report under any circumstances, other than if you were pursuing a claim for medical negligence or querying a cause of death.

OC

[Dubonnet lady]

Thanks again OC.

I've passed on what I've been told, so I'll leave the decision to her. :D

[Dubonnet lady]

Have just looked at the other Forum, and she says that her brother has been diagnosed with MS (Multiple Sclerosis) - and she suspects that's what her Mother had, but (She says) it wasn't known as such 40 years ago....

?? I don't know.

[Pippa Doll]

According to the web its not considered hereditary but there are genetic factors as well as environmental ones.

[Olde Crone Holden]

First described in 1858, so it was known about, 40 years ago.

OC

[dicole]

My grandmother died, officially from arteriosclerosis, but had suffered from Huntingdons Disease for around 15 years. My grandfather and mother had a fight with the doctor to have Huntingdons listed as a underlying cause of death. This is one of the reasons I was prompted to research my family history, to find out where the Huntingdons came into the family.

Her brother, my great-uncle swears there are no other cases in the family, although in the early 20th century, it was probably not recognised for what it was. THeir father died of Pneumonia in his early 60s, which could indicate underlying Huntingdons.

My uncle, grandmothers son, also died of HD effects, and now two of his three children also suffer, including one who also has MS.

But tracing it back any further is imposssible, as it did not actually cause death and probably had a later onset in the 19th century when lifestyles were different, particularly with this family who lived in rural Cambridgeshire.

I cannot see how her father could possibly block access to her late mothers records, but don't know where she would go beyond an inquest. I don't know that a doctor would keep records all that time.

Diane

[Janet in Yorkshire]

Perhaps the patient's GP could gain confidential access to the PM, for medical reasons?
S/he may not be able to pass on the findings to the family, if not relevant to the patient's current medical state. But perhaps a yes or no would help them.

[Olde Crone Holden]

I can understand the "wanting to know" but not sure that the medical profession would!

As there appears to be no known gene test, nor even that it is hereditary, I think the medical profession would view it as irrelevant whether her mother had MS or not. As far as I know, there is no preventative treatment either.

Dicole

I have personal but third hand experience of Huntingdons and I do know that it was rarely, if ever, put on a death cert as a cause of death. In fact the medical profession went to great lengths to cover up Huntingdons altogether as it was seen to be such a terrible scourge and affliction.

Back in the 60s, when I first knew about it, there was no treatment and no test available for family members. The medical profession decided (rightly or wrongly) that it would be cruel to tell people that a parent had Huntingdon's, as it would mean years of torture waiting to see if they too had inherited it.

(Did you know that all Huntingdon's can be traced back to one woman who lived in the 1600s?)

OC

[Uncle John]

There was a TV programme about Huntingdon's a few years ago. I remember first reading about it in New Scientist (I think) many years ago.

[Dubonnet lady]

Thank you everybody, for all your helpful comments, experience and advice.

I shall pass all this on - but it seems that it would be much more sensible if she looked in on this Forum and took in the information herself - so I'll suggest that!

:D

[dicole]

Hi OC

Yes I vaguely remember it all being able to be traced back to one woman, there was a TV programme several years ago about a family in Tasmania. The onset in that family appeared to be getting younger and younger. I wonder if there is somewhere I can find out who that woman was in the 1600s, and maybe link her to one of my families.

If we cannot link our family to any other with HD, does that mean it can also be a spontaneous mutation ?

My grandmother died in the early 1970s, before there was any treatment or even relief for the symptons of HD, but when my uncle's symptons became apparent, my mother and some his family had some testing done (which would have been in the early 1990s).

Off to Beijing in a few hours, but will follow this up next week.

Di

[keldon]

I suffer from MS and there is no evidence at the moment that it is hereditary.

http://www.mssociety.org.uk/about_ms/first_questions/causes_of_ms.html

They may be better off looking at the MS Society website for information on the disease and advice. There is also a very active forum.
MS Society - MS Society

[Olde Crone Holden]

Di

I can probably find the woman's name if I look hard enough. She was from a village in Suffolk? Sussex? and both she and her sister were hanged as witches in the USA, because their bizarre symptoms led the population to believe they were possessed by the devil.

It spread from the USA to Venezuela, where it is very prevalent on the shores of Lake Maracaibou, due to the local custom of cousin marriages. It also has a very early onset there, sometimes in toddlers.

From what I remember, reading about it, the severity of symptoms and the age of onset is to do with the number of repeats of the faulty information in the genes. Under 50 repeats and there will be no symptoms, but that person will be a carrier. Over 50 repeats, and the higher number of repeats, then the more severe and the earlier the onset.

The Maracaibou community have something like a minimum of 500 repeats.

The gene which is faulty, carries instructions to repeat itself anyway, which is what causes the problem. It is thought that gene therapy may well be a cure although that is still in the future.

It is not thought to occur spontaneously as all known cases can be linked to the two sisters, although in them it must have been due to a spontaneous mutation. One which fortunately hasn't ever happened again. It is a recessive gene and can therefore be suppressed by a healthy gene for many generations before it appears again.

OC

[Dubonnet lady]

Gosh OC - you took my breath away!!

The person about whom I enquired has now looked in here, and I think will probably keep on looking in: she has thanked me and everybody here for the advice and help you have given. :D

[Olde Crone Holden]

Important correction! (I was working from memory, sorry)

The gene is DOMINANT, not recessive, so if either parent has it, their children each stand a 50/50 chance of developing the condition.

It DOES appear by new mutation in 1% - 3% of cases, although geneticists say that this "spontaneous" appearance is probably inherited also, it is just that there is an incomplete (or incorrect) family history. Given that the condition wasn't spoken about until recently, this is quite possible.

Nancy Wexler is the lady (medical genealogist) who has done the world wide tree of HD sufferers.

I can't find the names of the two sisters on the internet but I have definitely seen their names written down somewhere, probably in a book. I will have a rummage.

There is lots of info on the internet including the most up to date research and treatment, all of which makes much happier reading than the grim death sentence that I knew about in the 1960s.

OC

[iversue]

many thanks

i am the lady that dubbonet lady wrote in about and i must thank you all for your answers to my question.
i have taken on board some of the very interesting and good replies but must let you all know that today i found a way around the battle to get my mums records from the hospital where she died.
one of the hospitals my mum was in closed in the 80's and so all records went to public records office
i have today paid my search fee and should get at least some information back, i know it wont be all of it but it may tell me something.

has anyone else experienced a problem when trying to find out who you are and where you come from?

many many thanks and its been a pleasure emailing dubbonet lady, what a kind person she is.
sue