Don

[Robin Harritt]

Good to see you back Don, and still able to cause a stir on SGB

Something I need to discuss with you if you don't mind, two of my maternal
half siblings have recently been diagnosed type 2 diabetic, they both have
different fathers and I supposedly have a different father to each of them.

I wonder if there is any additional advantage in finding out more about my
alleged father's family's history regarding possible instances of diabetes, or
should I just take it that I am at risk from my mother's side and leave it at
that, do you think?


Robin

http://harritt.eu

[Don Moody]

Post by Robin Harritt
Something I need to discuss with you if you don't mind, two of my
maternal half siblings have recently been diagnosed type 2 diabetic,
they both have different fathers and I supposedly have a different
father to each of them.
I wonder if there is any additional advantage in finding out more
about my alleged father's family's history regarding possible
instances of diabetes, or should I just take it that I am at risk
from my mother's side and leave it at that, do you think?

Normally I'd reply privately to any question involving health, but
what you raise here is of increasing public interest and could affect
many adoptees.

First and foremost, diabetes is not a single disease. It is many
diseases which happen to have multiple symptom in common. So it has to
be expected that there are many possible causes for those symptoms.
Sorting those causes is a difficult task and I do not know of any
researcher who would claim to know for sure all the possible causes
and what causes which symptoms.

Some causes are undoubtedly environmental, equally undoubtedly some
are genetic, and even more undoubtedly many forms of diabetes to not
arise from a single cause but from two or more acting in concert. It
really is a buggeration to sort out what might have happened in any
one case.

As you know, where genetics are concerned there is also a lottery. You
get half your genes from each parent but you don't know which half.
Even if you did know what you got it does not follow that it works as
'have gene, so have disease'. Both my male cousin and I have the gene
for breast cancer but neither or us have breast cancer. His sister
doesn't have breast cancer either, but that is because she inherited
the other copy of the gene which doesn't give rise to BC. One of my
daughters and one of my cousin's have BC even though neither their
parents nor grandparents show it. The common factor is the
greatgrandmother of both girls.

Diabetes skips about amongst generations in an even more complicated
way. My birthmother did not have it but her sister did. Obviously I
did not inherit from my aunt. I inherited via my mother.

It really is all a bugger's muddle which is still not understood in
detail even though hundreds of millions of pound and millions of man
hours have been spent on research. So the inclination could be just
give up and ignore the risk. That is exactly what is NOT sensible.

When I started in research and teaching, doing a blood glucose test
was a major lab exercise, required a lot of skill, and wasn't all that
reliable. Doing a glucose tolerance test was even more of a
time-consuming pain in the arse. Now doing blood glucose is a few
seconds at home if you have the right kit - very cheap and in any case
free on the NHS if you are or are suspected of being diabetic. If you
have blood samples taken for any other test, ask for the glycosylated
haemoglobin to be tested. The percentage of haemoglobin which is
glycosylated is a fairly good three-month average indicator of your
blood glucose level. It will pick up indication of diabetes which may
well be missed on occasional finger-prick tests.

There are other things you can look for as 'straws in the wind' to
indicate blood glucose levels but the best way to get clued up is to
have a talk with the practice nurse at your GP surgery. Diabetes is
now so common that there will almost certainly be one nurse in the
practice who is accepted as the knowledgeable lead on all matters
diabetic.

You've actually already done the most important part of the
preparatory work. That was finding out that there is diabetes amongst
your relatives. It puts you on alert. You'd be surprised, or perhaps
you wouldn't, just how many non-alert people are found to be diabetic
in the course of some entirely unrelated investigation or because they
have collapsed at work or on the road.

If you are alert to the possibility you can start straight away doing
something about it even before having any sort of test or any sort of
discussion with a nurse.You can attend to your diet and your exercise
regime. On exercise you don't have to go mad. Even taking the dog out
for a brisk walk is significantly more than many people achieve, and
it helps. Diet is a little more complicated to start with. Simply cut
out all the obvious sugary fattening things. No more treacle tart or
suet pud, no more meringues, cut out sugar in tea, coffee and soft
drinks. Eat plenty of fruit and generally a high fibre diet. In basic
terms, do what your wife has been telling you to do for years! Don't
be afraid of the occasional treat. It also helps with dieting if you
get a strong positive interest in food and drink! A healthy diet does
not have to be dull and unappetising. For a simple example, I
automatically say 'No' to all puds in restaurants. They'll always be
loaded with sugar, for which there are sound commercial and
biochemical reasons. I ask for cheese, and in the sort of restaurants
I'll go to more than once that doesn't mean a slab of supermarket
soap. So I'll get a plate of 3 - 6 very interesting cheeses, and
almost everybody else saying they wished they had chosen cheese too. I
recognise that it may not work for you if you don't like cheese and
are in an area where cheese is not regarded as an art form. I do like
cheese and there are always a couple of dozen 'boutique' Devon-made
cheeses available hereabouts. But the principle is the same. Look into
your local food and drink, get interested, and eat well but not
gluttonously. If you attend in these simple ways to exercise and diet
you will be healthier whether you have diabetes or not. If you have
it, you'll postpone the onset of gross clinical symptoms and
complications, possibly by many years.

It is one of the few 'benefits' of almost all forms of diabetes that
assuming in advance you are going to get it, and taking avoiding
action, is a good thing to do even if you don't get it. There is
nothing to lose and a lot to be gained by responding to the alert that
you've already found via your family researches.

However, I cannot emphasise too strongly that I am not a registered
medical practitioner and do not give specific advice on individual
cases. I'll make general comments as above but the over-riding
injunction to all individuals is to take their individual problems to
the person qualified and paid to look at individual problems: their
GP. I very positively refused to become a medical practitioner
because in my view it was incompatible with what I had to do as a drug
research director. In that role I had to play the statistical game:
the greatest good and the least harm for the greatest number. I had to
make decisions knowing that the consequences included some individuals
dying who would not have otherwise died. I had to make decisions such
as 'I will kill 10,000 people so that 10,000,000 may live. You cannot
make decisions like that if you look into the eyes of people one at a
time. That is the very demanding and very honourable task of being a
GP. I knew I couldn't do it.

I'm glad to see you are still monitoring sgb. I hope you noticed that
what I told the person looking for Scottish relatives was no more and
no less than what should be the position for any adoptee seeking
birthfamily. It is not inconsistent with me advocating doing what you
did and finding out about the private medical history of relatives. If
those relatives leave records or agree to give information in person,
then take and use that information. If for whatever reason seems good
to them they do not wish to divulge anything, then you have to do what
you can without information. There is no right to screw up their lives
for your benefit by incessant demand for information which gets those
relatives 'pissed off', to quote the poster on sgb. Hopefully, as time
goes on and more people recognise that there are genetic diseases or
genetic contributions to disease, they will accept that there is a
moral obligation to pass on information which may affect the health of
others. But it will only ever be a moral obligation and cannot be
forced regardless of damage to the informant.

The trouble for adoptees will remain, because of unwisdom in the
recent Act, that we may not be able to find birthrelatives who have
medically valuable information and would see a duty to convey it. But
for the peculiarities of my own adoption, and under the Act, I would
have no right to know I had got an aunt, that she had died of diabetic
complications, and that that information was relevant to my health and
the health of my children. The few of us ho got lucky, or as in your
case did an inordinately large mount of work, to get health related
information should never forget the vast bulk of adoptees are neither
lucky nor capable of doing that work.

That is one of the reasons why there is such a vast pool of
undiagnosed diabetics in the UK. They are not alerted to the need for
exercise and dietary changes, and so they die younger and with worse
complications than they need have had. Don't let it happen to you.

Don

[Robin Harritt]

Thanks Don for the very comprehensive answer.

I think there is health reason as well as a more general need to at least know
where and how my father's earlier offspring are as well as the later ones. Too
many different health problems to ignore in the various branches of my family.
Relatively unexplained deaths that could have been related to diabetes. if I
read you correctly you are saying diabetes is not a matter of simple Mendelian
Genetics of the kind we all learned in secondary school.

I'm a sugar addict I find it more difficult to give up sweet thing than I did
to quit smoking. The last couple of times that I have had fasting tests, each
time I have felt much better the following day than I normally do, so I reckon
there is something in my diet that isn't doing me any good.

The cheese is good news me, gave it up and red wine up for a while because of
migraines that turned out to be caused by drugs to stop my stomach from
producing too much acid.

Difficult to find a sensible diet for me, have to avoid a lot of the things
that are normally regarded as good for you, and wish they had left my gall
bladder where it was, but they reckon that would have been a bit risky. I
sister who has much the same problem following cholecystectomy but not with
the crohn's that they claim is the reason I don't reabsorb bile salts. But at
least we are now able to know about each others common health problems and
discuss them with our respective doctors. No thanks to the recent adoption
legislation though, which should have made it easier for all family doctors to
share relevant information in adoption cases.

Robin

*

[Don Moody]

Post by Robin Harritt
Thanks Don for the very comprehensive answer.
I think there is health reason as well as a more general need to at
least know where and how my father's earlier offspring are as well
as the later ones. Too many different health problems to ignore in
the various branches of my family. Relatively unexplained deaths
that could have been related to diabetes. if I read you correctly
you are saying diabetes is not a matter of simple Mendelian Genetics
of the kind we all learned in secondary school.

There are single gene diseases where gene D causes the disease and
recessive gene d doesn't. Of the four combinations, DD, Dd, dD will
exhibit the disease but dd will not. Conersely there are sngle-gene
diseases where D does not cause a problem but recessive d does. Then
DD, Dd and dD will be disease free but dd will have the disease. Both
patterns comply with Mendel. Ubfortunately, none of the known forms of
diabetes fit either pattern!

I won't go into the maths and reasoning here because it gets awfully
complicated but diseases can depend on two or more genes plus whether
they are 'switched on' or not by factors within the body - such as
hormones, or factors from outside the body. You've also got to
consider diseases which are partly genetic but happen when something
from outside, such as a dietary element, is lacking. Then you've got
the diseases which are due solely to outside factors but give similar
results in the body to genetic causation. It really is a complex
buggeration to sort out which is what, and I don't know any honest
medical scientist who ever would claim a final, provable, sort-out of
any disease with complex causation. If you read their papers you will
always find the weasel words such as 'is consistent with.'

Post by Robin Harritt
I'm a sugar addict I find it more difficult to give up sweet thing
than I did to quit smoking.

There are times when the craving for sugar is real. The body actually
needs some 'fast' energy source. Diabetics know it only too well. They
call it a 'hypo'. However the truth is that most craving for
sweetness is culturally determined or habitual. It can be controlled,
but like any addiction takes a conscious and ongoing effort. You can
'come off' sugar and glucose by using artificial sweeteners. The
original synthetic sweetener, saccharin, has long attracted doubt
about its potential risk to health in the long term. However the real
disadvantage for a proportion of the populaion is that it tastes
bitter. Aspartame, under trade names such as Canderel, is probably
safer but its disadvantage is that it is hydrolysed quite rapidly in
hot moist conditions. Which may be OK if you sprinkle it on stewed
plums as served but is not a lot of use if you put it into the plums
and them stew them. Aspartame also suffers a disadvantage in that it
doesn't have the 'bulking' effect of sugar so some baking recipes are
damn nigh impossible to execute. Hence the arrival of Splenda, a Tate
and Lyle product. I've no doubt it has the sweetness T&L claim and is
stable in the cooking process as they claim. But I wouldn't use it.
T&L will, and you may, claim that decision is wholly irrational and
not based on laboratory testing. I have done no testing. But I don't
like the potential consequences for serious harm by introducing into
the body a molecule which is similar in size and shape to a natural
molecule, which could bind in their place to enzymes, but which will
not be broken down by those enzymes in the same way to give products
capable of not doing harm to further enzymes down the chain. I would
hope T&L have done enormously exhaustive biochemical and animal tets
before launching the product, but it won't surprise me in the least if
serious trouble is reported in the future. Since I can do without
Splenda I do do without Splenda, rather than take the risk.

The better long-term answer is to so develop an interest in the finer
aspects of food that you find swamping all the nuances with a massive
dose of 'sweet' is obnoxious in itself. You'll give up the sugar
because you want to taste what you paid for. There is not a lot of
point, for example, in buying a particular variety of strawberries and
then ladling sugar on top. If you are going to ladle sugar on then buy
whatever cheapo strawberries are 'on offer' today. They'll taste the
same.


The last couple of times that I have had fasting tests, each

Post by Robin Harritt
time I have felt much better the following day than I normally do,
so I reckon there is something in my diet that isn't doing me any
good.

It's true for everybody. There is only one way of dealing with it -
unless you've got some lunatic desire to be on a fasting test every
other day. Try for a fortnight NOT to have some particular food. If
you don't feel any better, reinstate that food and leave out another
for a fortnight. And so on until you identify the culprit. It doesn't
mean to say there is anything wrong with the food itself. Your wife or
a visitor may eat it without any problem. We all have our digestive
peculiarities.

For example, I have the shellfish allergy. Not the iodine allergy for
which it is often mistaken. You put one oyster in a beef stew and I'm
in trouble. If I've had a glass of wine, I'm on the floor in seconds
in anaphylactic shock. Ditto for mussels, cockles and whelks. Oddly
this is one that runs in the family, to the amusement of a B&B
proprietor near Campbelltown. We went there because of its reputation
for fresh seafood but I let the proprietor know in advance about no
shellfish. He assured me not a worry. When we arrived I explained that
although my name legally was Moody, I was a descendant of the Bain
family of Bonhill in Dumbarton and many of that family have the same
allergy. The reply was a laughing 'I know'. He went on to explain that
his wife, who was the chef, couldn't have shellfish in her kitchen
because she was allergic, and she was a Bain from Bonhill and most of
her relatives had the same reaction. But you'd risk your life if you
tried to get between my mother's sister and a dozen oysters with a
bottle of champagne. I think she used to order and have them out of
sheer devilry at family parties because she knew no-one else could
touch them.

Another common dietary problem which affects gents more often than
ladies is stomach aches following the eating of green tissues of any
brassica. No brussels, no cbbage, no savoy, no lettuce, no broccoli,
none of the things you were told were good for you. They are indeed
good for you if you are not one of the sufferers. It is only the green
leaves. Cauliflower florets do not give the problem nor do radishes
(radish is a brassica) where it is the roots which are eaten.

Don't get confused between foods which actually have an effect on your
body and things you simply don't like. I positively dislike the smell
of garlic, but it doesn't do me any harm if I eat the stuff.

Post by Robin Harritt
The cheese is good news me, gave it up and red wine up for a while
because of migraines that turned out to be caused by drugs to stop
my stomach from producing too much acid.

Enjoy!

Post by Robin Harritt
Difficult to find a sensible diet for me, have to avoid a lot of the
things that are normally regarded as good for you, and wish they had
left my gall bladder where it was, but they reckon that would have
been a bit risky. I sister who has much the same problem following
cholecystectomy but not with the crohn's that they claim is the
reason I don't reabsorb bile salts. But at least we are now able to
know about each others common health problems and discuss them with
our respective doctors. No thanks to the recent adoption legislation
though, which should have made it easier for all family doctors to
share relevant information in adoption cases.

This really is a major health disaster area for adoptees with untraced
birthfamily. I know all about medical confidentiality but some people
interpret it in an arse about face manner. Medical confidentiality is
not a 'good' in itself. It is an aid to protecting the interests of
the patient and of others. There is no reason why medical
confidentiality should not be broken when doing so achieves the same
end of protecting the interests of patients and others. Indeed the law
specifically provides for breach of confidentiality by having the
category of 'notifiable diseases'.

Furthermore the information needs to come not just from others younger
than you or from your birthparents only. You need the concept of
genetic distance (which adds another layer of buggeration to working
out the genetics of disease). Genetic distance is roughly the inverse
of the percentage of genes you could expect to share with some other
person. The greater the distance the less the chance that something
about the health of the other is relevant to your health. The fate of
an aunt or older half sister, who are not your ancestors, is more
relevant than the fate of a 4-greatsgrandfather who is your ancestor,
when it comes to estimating probabilities As far as I know these
well-known medical concepts got not a blind bit of notice in the
preparation and passing of the Act. As I wrote in The Times, no matter
what is done by however many well-intentioned adopters, fosterers and
carers to help kids, it won't change a single one of the genes in
every cell in the body of those kids. Everybody is at some sort of
genetic risk but at least those in ordinary birthfamilies have a
chance of knowing what those risks are. With early warning maybe they
can make sensible lifestyle decisions. The new Act leaves adoptees in
general without even the means of knowing there are risks and
therefore with no chance of making informed lifestyle decisions. Our
fates (which we probably find out too late anyway) should not depend
on enormous amounts of hard work such as you have done or enormous
luck such as I had.

And the harm is not only to ourselves but potentially to our
descendants. There was probably no way of preventing one of my
daughters getting breast cancer but if her risk had been known in
advance it would have been found sooner, she probably would not have
had a mastectomy, and she certainly would have had less radiotherapy
and a longer life. Her second cousin drew a worse straw. She died of
BC and secondaries before the familial risk was found out. It was
necessary to climb the family tree back to their mutual
greatgrandmother to complete the picture of just who is at risk. There
is no provision in the Act for any adoptee to have the right to get
even close to doing that kind of research. And not doing it killed one
and possibly two women neither of whom was themselves adopted.

Don

[doug thomas]

Post by Robin Harritt
Good to see you back Don, and still able to cause a stir on SGB
Something I need to discuss with you if you don't mind, two of my maternal
half siblings have recently been diagnosed type 2 diabetic, they both have
different fathers and I supposedly have a different father to each of them.
I wonder if there is any additional advantage in finding out more about my
alleged father's family's history regarding possible instances of
diabetes, or should I just take it that I am at risk from my mother's side
and leave it at that, do you think?
Robin
http://harritt.eu

Robin

My wife used to be an instructing dietitian in a Diabetes Education program
for newly diagnosed diabetics.

Get thee into a similar program if one is available, and learn what you can
and can not safely eat.

Doug Thomas

[Robin Harritt]

Post by doug thomas

Post by Robin Harritt
Good to see you back Don, and still able to cause a stir on SGB
Something I need to discuss with you if you don't mind, two of my maternal
half siblings have recently been diagnosed type 2 diabetic, they both have
different fathers and I supposedly have a different father to each of them.
I wonder if there is any additional advantage in finding out more about my
alleged father's family's history regarding possible instances of
diabetes, or should I just take it that I am at risk from my mother's side
and leave it at that, do you think?
Robin
http://harritt.eu

Robin
My wife used to be an instructing dietitian in a Diabetes Education program
for newly diagnosed diabetics.
Get thee into a similar program if one is available, and learn what you can
and can not safely eat.
Doug Thomas

Hi Doug

Not got it myself as far as I know, but starting to look as if I have a very
strong family history. So risk assessment, avoidance and damage limitation.

A few other nasties as well arterial disease and ischemic heart disease also
seem a bit prevalent.

And of course I'd to warn anyone in the family with kids about the possibility
of Crohn's as it is so often misdiagnosed as anorexia or endocrine problems
when it causes late onset of puberty.

All just a few of the thing where we are better off knowing something about
our family history. But I find myself flogging a dead horse trying to get the
point across where it matters.

How is your search going, any leads yet?


Robin

*

[Don Moody]

Post by doug thomas
My wife used to be an instructing dietitian in a Diabetes Education
program for newly diagnosed diabetics.
Get thee into a similar program if one is available, and learn what
you can and can not safely eat.

The point both Robin and I have tried repeatedly to get across is that
for some conditions waiting until there is a formal diagnosis is
waiting until after the worst of the damage is already done. The
common problem with diabetes is precisely that it isn't diagnosed
until 'too late'. I'm not decrying the value of the work done by your
wife. What I'm saying is that it would be a hell of a lot more value
if delivered long before a diabetic was 'newly diagnosed.' But to
target the advice to those likely to benefit it is necessary to
identify them by some means.

No doubt biochemical screening and genetic testing applied population
wide would sort out the 'liables' but at enormous and continuing cost
up-front. So there needs to be a pre-screen which cuts the numbers to
something manageable and affordable. The easy and common method is to
look at ancestry. If many (relatively) of the family have a disease
then the younger members who don't yet exhibit the disease are the
ones with highest priority for testing.

But how can the ancestry method of screening be used if the ancestry
is not known; if there is no way of getting information on that
unknown ancestry's health to the GP of the young person? That is the
core of the problem for all adoptees and for all genetic diseases
which can be better dealt with if lifestyle decisions are made early.
Decisions not only about diet but about things like whether to have
children. Decisions not only about exercise but about what jobs not to
do. And so on and on.

If your wife had been the dietician who saw me when I was 'newly
diagnosed' with Type II diabetes she would have seen me about a decade
before I needed to be seen if I had known about my genetic liability
to diabetes in time. And that knowledge did not come until after all
my children were born so there are more people in existence with a
genetic liability than perhaps there need have been.

It isn't only diabetes. Robin has mentioned other conditions. I'll add
breast cancer. One of my daughters was diagnosed late, damn nigh died,
had to have a mastectomy and radiotherapy, and will probably not
survive to see her kids married. What was the risk for my other
daughters? As far as the NHS is concerned, one relative dying of BC
does not justify moving all related females from 5-yearly screening to
annual screening. To do that you have to produce two or more close
relatives with BC. How does an adoptee with no knowledge of
birthfamily do that? Being a persistent bastard, a trained researcher
and having had a somewhat atypical adoption I did dig out the
information. My daughter's second cousin and the mutual
greatgrandmother of both girls had died of BC. As a result there are
now 18 related females shifted from 5-yearly to annual. They all know
what to look for and when to demand tests. Those who are going to get
BC will have it found earlier, will have much milder treatment, and
will have much longer survival times. Those 18 will not have to wait
to see a dietician or any other kind of medical professional until
'too late'.

What Robin and I keep emphasising is that we are very unusual in
finding out so much about our birthfamilies and, because of lack of
provision in the Act and in the practice of medicine, applying that
knowledge to helping with the health of ourselves and our relatives.
What we are both concerned about is the vast majority of adoptees (and
orphans and refugees and anybody who has lost contact with
birthfamily) who haven't got the knowledge, don't know how to apply
it, and can't rely on a system to cover for them because there is no
system.

Yes I do value and take advice from dieticians, podiatrists, practice
nurses, specialist nurses, GPs and specialists in helping me deal with
what has happened to me. But I don't know one amongst them who hasn't
said at one time or another that they would rather have delayed the
onset and reduced the severity of complications by telling me what to
do years before they or I knew of the need for their advice.
'Prevention' is better than cure. And the modern money-driven NHS is
beginning to realise that 'prevention' is also cheaper than cure.

The ultimate dietary advice for newly diagnosed diabetics would be to
give none at all. Because all that needed to have been said would have
been said decades before the clinical diagnosis. That isn't going to
happen in my lifetime and possibly not in the lifetime of my children.
It isn't going to happen ever for adoptees if there is no way of
getting ancestral health information to the adoptee's GP.

Don