nytimes.com/2018/08/13/heal...
We say knowledge is power but how about too much information?
It is always something I am wondering about..If I was young and healthy would I want to have my genetic profile done and know all the risks that can occur..my personal answer is no..
A heavy topic for the weekend ๐ It is just by chance that I read that NYT article..sorry ๐
If not as I am one to look on the bright side of life,
I wish you well xx
Fran ๐ท๐๐ผ๐
Very interesting article Fran and Iโm pretty certain I would score high on heart disease. Both parents died from heart related issues but I try to take care of myself and wouldnโt really want too much information. It could make me sit up and take notice though.
Have a good weekend. Xxx ๐๐โค๏ธ๐
Hello Carole,
Well thatโs it, some of those things we know already..I know Dad had hyper cholesterol, a triple bypass etc..
Anyway have a fun weekend xx
Fran ๐๐ธ๐
The problems with genetic profiling is not what you would find out but what the rest of the world would find out.it could preclude you from obtaining insurance,employment even finding a partner in life.you could even be written off by the medical profession as not worth maintaining so as useful a tool as it could be in the wrong hands and in a more judgemental society it could make you an outcast.happy thoughts for my happy friend lol
have a gene free day Happy Fran.
Love Ski's and Scruffs xx
True my dear Skis ๐ฟ..You are a clever lad ๐
Regarding data and insurance Iโm sure it will come if it hasnโt already. At least you must declare what you know you have..
Well in Switzerland, health is private, the LAMAL, the basic health insurance is compulsory, but run by private insurances so I suppose it must be subsidised by taxes if not they would lose out.
Well as a patient you still have a minimum franchise of 1,000 SFRs would you believe and you have to declare your medical history.
Anything which is costly or could be costly is excluded from complementary care, which is the equivalent of private healthcare in the UK. I mean any lung diseases for example, cancer, obesity.
The other futuristic concept is that people could programme disease free genes, people etc we are not far from 1984!! Who has cloned her dog recently Bea told me about that, was it Barbra Streisand I canโt remember..A world full of Arias and Scruffynounettes!!
I mean somebody could clone Messi or Ronaldo..๐๐
No I havenโt had a drink๐, just finished 45mn in the pool and a dish of hummus and crackers.
Aria is in the bath for some reason and I need a nap!
Fran xx
In my family you just have to look at your grandparents and parents.. Looking back I thought old was forty they were having heart attacks dying young.. Most don't make it past 60... I didn't realized most was inherited ... If I knew that I was going to be diabetic by thirty I would of looked after myself If I knew I was going in inherit COPD wouldn't of sit with smokers... For me you can apply what you know and maybe slow things down.. Wish I would of new... I'm on Low Carb diet got off the medication I don't light candle I don't sit with smokers ...Dementia runs in my family so I watch my sugar intake.. For me I wish they had this kit I wouldn't be in the mess I am today...
Well you may be the exception to the family rule..
You see thatโs why I donโt like my life being programmed in that manner..I mean prevention is one thing but I want to live my life without being obsessed by what may happen because it may not.. and that is the beauty of life in a way, our lack of control..
Take care x
Fran
I grew up when women and Dr's smoked in hospitals wards in the baby ward.. When I had mine the smoke looked like a bingo hall.. .. I'm 61 this month .. Eating healthy back then was different than today they didn't know much about healthy eating not smoking all that stuff .. Things are so different today non smoking area promoting health... My grandchildren have it better.... But for me healthy living back then was different .. My friends who never smoked died of COPD .. We didn't have the computer to look up things of why is my family sick.and having heart attacks and diabetic by thirty.. i . We had to ask the Dr no one talk about inheriting sickness back then.... today your lucky.... You can look up so much like I do now... Certain things I wouldn't want to know other I would... But for me I wouldn''t bother already have what my mother and grandparents had....But if insurance companies want the information I would never do it..... Just a different opinion....
As you say..striking a balance between medical progress and too much information..
Now you mention it I remember my in-laws were chain smokers and we started our marriage living with them. A coal fire in the front room..I was sick with chest infections all year round. My GP had told me at the time, you need to move. He knew then..I was 20 and I am 66.
Have a good day x
Fran
There's always an exception to the rule Fran..my brother died at 41 with heart attack my father my uncle and his two sons all survived hearts attacks so because of the family history is was sent to hospital for tests and thank hevens was absolutely fine now heart disease nor no sign of heart disease just a swinging brick ๐..just the lungs but sort of used to those rascals now..so here's wishing you all better health Ger
There you are Ger..sorry for your brother though, itโs awful to die so young. Glad your ticker is doing well x
Fran
Hi Fran it's difficult isn't it? I don't agree with profiling every little possible condition I could be predisposed to...like Skis said, imagine the knock-on effects to insurance costs, job opportunities, relationships...but at the same time I am going to make sure my girls know to watch out for Ovarian and cervical cancer, and the CDH I was born with (in their daughters) as they can all be hereditary. I think it's good to be aware maybe through talking to family, but maybe not so extensively as having genetic profiling done.
We do live in an age where all our personal information is being used as currency by companies and governments these days...it worries me.
Lots of love, I hope your having a good day ๐ xx
Hello Anne
Yes Bea was recommended the vaccination against cervical cancer but didnโt have it, she is having regular checkups. There is too much controversy around it, I donโt think it is 100%.
You have said it all Anne ๐ the for and against ๐
Fran xx
Yes Charlotte has had the vaccination too, because of my history I was happy for her to have it ๐. I understand the worries surrounding it though.
Have a good evening ๐xx
Still she was the age..Bea is in her thirties! But apparently they give it to adults as well.
Good evening Anne xx ๐
Oh I see what you mean now..๐. Gosh I didn't know they offered it to adults too. It's important to look into these things before you have them though isn't it? It's a personal decision if you go ahead or not. If shes having regular check ups im sure its fine ๐๐ xx
Well she had a scare..xx
Thanks Fran very kind..ironically my brother Des was a physical training instructor in the army but that how it goes..so I try and we all know it's not easy some days to thy and enjoy some part of EVERY day every just to smile at one of my 3 granddaughters sure isent that a good day and something I CAN do every day ๐
Makes me think of footballers and heart attacks..too much sport is no good if you have a heart defect..
Enjoy your 3 granddaughters ๐ธx
Fran
I think knowing would worry me too much. I am a worrier already, don't need more on my mind! Hope you are keeping relatively well xx
Hi Fran, it's an interesting dilemma. To know or not. Several years ago I did a chart through the Edgar Cayce Association for Research and Enlightenment. Wanted to know why it seemed I was always ill with something, it proved a fascinating thing to read. I took it with a grain of salt, ... but still....
Thank you for the article ๐ค
TTT
Hi Tom,
What I wonder is, is it still in the back of your mind, will you regret that you havenโt acted on it..after all once we have the information, we still have a choice..it is a personal approach of course..I have my fair share of genetic problems ๐ I am at a stage where I think please not another test, not another scan..but when it is something that matters to me like my eyes, I will go in on Wednesday..so I am full of contradictions I suppose ๐
Have a good day x
Fran
Hi Fran , I have had some genetic testing starting with the gene for cystic fibrosis, then primary ciliary dyskinesia. Also, the test for brca 1and 2 as cancer runs in my family. However, cancer skipped my parents and thus far I am the only one of my siblings to have been effected.
Genetics fascinate me, although if I had something in my history such as Huntington's Chorea, for example, I honestly don't know if I would want to know. I do have, if you will, the luxury of knowing that as I have no children, I won't be passing down anything.
Had I children, and some seemingly irreversible heritable condition than I should want to be able to decide if or not, to have children. Had I children and a familial tendency towards heart disease or diabetes than I would want to provide them with that knowledge.
Like you, I dread adding any more health issues to my plate. My greatest concern always is any further surgery as I have a very hard time recovering fromgeneral anesthesia.
It's an interesting conundrum...๐ค
TomTitTot
Anne, for short ๐
Thank you for sharing Anne ๐
There was a geneticist at the LAM consultation, I asked if it was hereditary because passing that on to Bea would be awful but she said no, although the gene was in me as an embryo, it was dormant, and cell mutations would develop eventually..wondered what trigged them..Will never know! ๐
I was offered DNA profiling the last time I had a (private, via health insurance) annual update consultation and tests at Papworth Hospital (Cambridge UK) lung defence unit in May this year for my (relatively moderate and under control) bronchectasis/immuno-deficiencies.
My Immunology consultant offered it and mentioned that it is now being (or was it to be?) offered free on the NHS. I said yes - not knowing much about the detail behind it other than thinking this was some kind of predictive tool. A couple of more fials of blood were then filled when they 'did my bloods'. I haven't heard anything back yet.
I assume what I was offered is the same thing this article talked about, or similar. Has anyone else here been offered profiling?
I think if I was young I would share some of the concerns in the knowing/not knowing sphere. However the older you get I find the more reconciled you become with the uncertainties of life and one's own mortality. Having a young family at, what's seen as being, an older age (daughter of 8, wife 24 years younger - I'm 67) means that I am more interested in planning for the survival of my family unit than I am in worrying about dying.
Perhaps it helps that I have faced two instances in my life where I was faced up to a more directly life-threatening outcome (HIV and lung cancer) and found myself able to cope with it until the respective dates of my release from threat. One was a mistake by an STD clinic that survived over a long bank holiday weekend and the other by a UK pulmo (not Papworth) being too sure of his own early diagnosis, until we got to an ultimate biopsy 2 months later. Papworth later nailed it as a treatable MALT lung lymphoma and Addenbrookes Hospital radiology 'cured' it. To the initial pulmo's credit, he admitted he had been an idiot! I'm sure others who have faced similar will tell you that you soon find out about the resilience of the human spirit!
Very interesting thank you.
Well I remember receiving a letter from the NHS around 2011 saying I had been selected by my GP for research testing but I wouldnโt get the results, it was just part of a research, so I refused.
I had to go to Hounslow somewhere first thing in the morning. I donโt drive, it was miles on the tube for me. I thought if I was going to go through all that at least get the benefits of it.
Imagine that at that stage I still believed I had severe asthma and had never been diagnosed with LAM. So if they had finally found out they wouldnโt have told me?
Recently I had a genetic pharmacology test. It was offered to me because all the meds I take and the adverse side effects I have. I had to pay for it, which I did. I am waiting to hear. It is supposed to detect the meds that affect your metabolism positively and negatively and help the specialist with a choice. Weโll see.
Take care x
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