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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

My relatives didn't tell us about a genetic disease, I'm thinking of suing them now my mother is very sick

54 replies

SpiralHecate · 15/07/2024 14:53

Hi, this is going to get complicated, I'll try and be clear as possible. I've changed the names.

My mother has four siblings, two sisters and a younger brother. Ten years ago her younger sister, Alice, was diagnosed with a genetic health condition called haemochromatosis. It's also known as iron overload, your body stores up iron over time and if left untreated it can cause severe tissue damage and health complications. If the condition is diagnosed early enough it can be easily managed.

Well when Aunt Alice was diagnosed she told her middle son Martin and my other aunt Rosalind, but ordered them not to tell anyone else in the family, and they didn't. My aunt Rosalind got herself tested and tested positive, and she had her two daughters get test and they're both carriers of the disease. I don't know what my cousin Martin did, but presumably he tested negative as he didn't say anything to his ex wife regarding their children. Alice's husband Cecil did test negative, though that means their youngest son, David could still be a carrier. However they didn't tell David, even years later after he'd married and his wife was pregnant.

Fast forward to 2 years ago and Alice died. I didn't know the exact details of how she died, as in our family people don't like to communicate, but she was in extremely poor health in her final years. We would have visited her but it was pretty clear we weren't wanted. At her funeral my aunt Rosalind let slip to one of Alice's daughter-in-laws, Violet, that Alice had had a genetic condition. Violet pressed her for details and found out it was haemochromatosis. Violet thought the rest of the family should know, but didn't want to rock the boat so didn't tell us, but she did at least tell David who said he'd get tested. Violet's husband Miles (Alice's eldest son) died 10 years ago, but they have two daughters and Violet got them tested, one of them tested clear but the younger one tested positive for haemochromatosis, it transpires Violet's family also carries the gene. Violet did ask Rosalind if she'd told my mother but Rosalind wouldn't give her a straight answer.

At this point Violet decided that she didn't care about rocking the boat and that this was too important to keep quiet about any longer and she messaged me on WhatsApp two days ago and told me everything I've detailed above. That evening I contacted my cousin in Canada, my uncle's son, to warn him that they all needed to get tested for haemochromatosis, no one had told them anything either. I also contacted Martin's ex wife to check if the children had been tested, she didn't know anything about it but said she'd ask him.

With regards to my situation, I've been on the phone today trying to arrange tests for myself and my mother and my son. My mother is poor health right now on account of falling down and fracturing her hip two months ago, and since the accident her mental health has taken a severe downturn, she's very confused all the time and her memory is fragmented. I remember that according to Violet, Alice showed similar symptoms before she died. I am worried sick that my mother has haemochromatosis, and that it has gone untreated until now on account of my family's decision not to inform us about it. While I was trying to organise a blood test for her this morning I had a call from my mother's carer that she'd found my mother stuck in the bath unable to get out and had to call an ambulance. My mother is currently in hospital and I'm waiting to find out if she's being readmitted, when I talked to her on the phone she confused me with Alice and was convinced that the bath she'd been stuck in wasn't in her house. If my mother has haemochromatosis, and if she'd been diagnosed ten years ago, her condition could have been managed then and she wouldn't be in poor health now. Of course she might not have it, but given both her sisters tested positive it's a high possibility.

I am furious about all of this. The level of my fury hinges on our test results, if Mum doesn't have it I'm still angry that Alice, Cecil, Rosalind and Martin kept the rest of the family in the dark about something so important, if she does have it then they have directly caused her harm.

Besides needing to vent, I also wanted to ask if anyone knows if it's possible to take legal action against them, for having withheld such vital information from us for 10 years? I'm not interested in getting money from them, I just want them held to account. They've done a lot of horrible things to my mother over the years, especially Rosalind, but this one is really beyond the pale.

OP posts:
KvotheTheBloodless · 15/07/2024 14:56

I'm afraid that, upsetting as it is, you are not entitled to the private medical information relating to your family members. They have the right to privacy.

Sorry you're in this situation, it must be very upsetting, but at least you know now.

HelloMyNameIsElderSmurf · 15/07/2024 14:56

I am very sorry because you are obviously very upset and raw, but of course you can't take legal action because someone withheld their own private medical information from your mother. Siblings/cousins, whatever, don't have the 'right' to know anything about anyone else. It would have been infinitely more helpful to know of course, but I can't see any action you can take.

The NHS is pretty good at picking up on haemochromatosis by the way so I wouldn't jump to conclusions just yet.

Shielehdie · 15/07/2024 14:58

I’m so sorry you’re going through a stressful time - it sounds really hard and you must be so worried about your mum. I hope she’s on the mend soon.

I’m a lawyer and I’ll just let you know now there is no basis on which you can sue someone for not sharing their private medical information with another person, even when it’s directly relevant to them and the other person not knowing could result in harm.

This can’t be easy for you and I wish you well.

Overthebow · 15/07/2024 14:58

No you can’t take legal action, you don’t have any right to their private medical information.

Thisisnotmyid · 15/07/2024 15:02

It’s an awful situation but PP’s are correct. They were under no legal obligation to tell you about a possible hereditary condition.

SpiralHecate · 15/07/2024 15:02

Thanks for the replies. I gather the gist is I can't do anything, because while Rosalind, Martin and Cecil were all aware of Alice's private medical information they were under no obligation to share it with anyone, even if it led to direct harm.

Still, I needed to vent because I am really angry with all of them. I'll just have to settle for never speaking to them again.

OP posts:
bananacreampie · 15/07/2024 15:03

Your mother's symptoms as described here don't seem to me to be related to haemochromatosis.

Kriscross · 15/07/2024 15:05

KvotheTheBloodless · 15/07/2024 14:56

I'm afraid that, upsetting as it is, you are not entitled to the private medical information relating to your family members. They have the right to privacy.

Sorry you're in this situation, it must be very upsetting, but at least you know now.

This.

Shitlord · 15/07/2024 15:06

I'm so sorry to hear your mum is unwell and can understand your feelings but I can't see on what grounds you think you would be able to take legal action? Those carrying or suffering from a genetic condition are not obliged to inform everyone they are known to be genetically related to. Haemochromatiosis is diagnosed by a series of blood tests which would have been initially indicated by an abnormal FBC so genetic testing isn't essential to get the condition ruled in or out. I'm sorry to say it was your relative's decision who they wanted to share their diagnosis with.

Paganpentacle · 15/07/2024 15:07

Hi

If your mum had hip surgery recently after her fall... they will have checked her full blood count whilst in hospital and cross-matched her for surgery.
If there was an issue it would likely have been picked up then.

Shitlord · 15/07/2024 15:07

Or at least to get diagnosis started and an abnormality in that direction indicated**

Cookerhood · 15/07/2024 15:08

If she's ever had full blood tests done before (particularly post menopause) it would have shown abnormal results which would have been flagged.

ItMustBeNiceToBeQueen · 15/07/2024 15:11

Your mum would have had blood tests when first admitted, they likely would show abnormalities in her full blood count and liver function tests that should trigger further investigation if her iron levels are high.
Her confusion could just as easily be down to a UTI. Have you spoken to the hospital to tell them this information? It may be useful if her blood tests come back abnormal.

I do know one person who wasn’t diagnosed until late 70’s, despite having regular blood tests monitoring another condition, because nothing was ever abnormal for such a long time, and she never had any symptoms.

https://www.nhs.uk/conditions/haemochromatosis/symptoms/#:~:text=Symptoms%20of%20haemochromatosis%20usually%20begin,found%20during%20a%20blood%20test.

I hope your DM recovers soon, I know it’s natural to want to blame those that didn’t tell you, but being bitter isn’t going to help your DM.
How will you feel if it turns out she doesn’t have it after all?

Schoolchoicesucks · 15/07/2024 15:12

I understand your frustration and also that sharing knowledge of potential conditions can help improve awareness and treatment.

However I don't think that it is or should be enforceable for people to have to disclose their own private health conditions.

Your mother may not have haemochromotosis. My understanding is that as well as there being a genetic cause, there are also environmental factors. And that women with haemochromotosis develop issues later in life than men. So her current poor health may be unrelated.

Symptoms can be picked up through simple blood test (though diagnosis I think is a longer process) so I agree that NHS do tend to pick this up where there are symptoms.

Can you book a GP appointment for yourself to ask about tests?
I hope your mother's health improves.

MaggieFS · 15/07/2024 15:12

What a lot to take in. The timing coinciding with her fall will likely also be adding pressure, especially if she is now in hospital.

I can't fathom people who wouldn't share such news. I can understand why you are so angry. But do take a pause and breathe before making any significant decisions.

TheQueenWhoNeverWas · 15/07/2024 15:14

Elderly women falling, breaking their hips and being confused doesn't scream haemochromatiosis to me.

Get tested of course, and feel free to be angry with your relatives, because I do think they morally should have told you, but legally it's their private medical data and they have no duty to share it (except where STDs are concerned).

TansySorrel · 15/07/2024 15:15

I agree they were selfish and wrong not to bother to tell your mum.

Helpneeded1995 · 15/07/2024 15:16

When a close member of my husbands family found out they had haemochromatosis there doctor recommended all close family to get tested.
My husbands t-sat are high and iron are over a 1000.
So he is waiting to see hepatology.
Yes they should of said but it is not mandatory just recommended.
Also normal standard blood tests might not show haemochromatosis.

HoppingPavlova · 15/07/2024 15:20

I also wanted to ask if anyone knows if it's possible to take legal action against them, for having withheld such vital information from us for 10 years

Absolutely not, and rightly so in that you cannot make it mandatory for anyone to share personal health information. Everyone has a right to decide what to disclose and to whom.

ObsidianTree · 15/07/2024 15:24

You are right to be furious. The fact that they decided not to tell only certain people knowing full well there would be a chance that you all might have it. Horrible people. I don't think you can do anything legally, but I'd certainly would never speak to them again.

Andthereitis · 15/07/2024 15:25

It seems really odd to have a genetic disease and not tell those immediately likely to need testing so they can also improve their own health outcomes.

It would really frustrate me and I think it's wrong.

mindutopia · 15/07/2024 15:27

I think you are getting very worked up about something that is not a big deal. I’m a carrier for haemochromatosis. I’ve had the genetic testing because of unusually high transferrin saturation results on a routine blood test. I have one but not both of the genetic markers, which means I have odd blood tests, but not true haemochromatosis.

Having your iron levels checked is very common and certainly all of you adults will have had your iron checked at some point in your life. If it was not extremely high, there is no need for panic and running for genetic testing.

I will arrange for my children to be tested as the NHS advised it when they turn 18, because I’m a known carrier. But it honestly never occurred to me to mention it to any family members beyond that, certainly not my mum (we are NC but weren’t when I first found out). She’s 70. If she had haemochromatosis and passed the gene on to me, she absolutely would have known decades ago. It’s a very manageable condition and one that easily flags up in routine blood tests.

DrunkTinkerbell40s · 15/07/2024 15:28

I get everyone saying people are legally entitled to keep their health information private, but this isn't always the case. What about when people are HIV+ and knowingly risk infecting others, they can be charged for that? Why is this different? They're knowingly keeping information from other people that could, at worst, lead to an early death or severe health problems? Isn't that, at worst, manslaughter?

I don't know, I'm just thinking out loud so please don't shout at me!

To the OP, I'm so sorry you're going through this. Like others have said though, if your mum has had any blood tests in the past I think this would have been picked up?

AzureAnt · 15/07/2024 15:28

It's a shame they kept it from you but legal action will help nobody. It won't stop people being carriers. Get yourself and your family tested and fingers crossed for a negative result x

x2boys · 15/07/2024 15:30

SpiralHecate · 15/07/2024 14:53

Hi, this is going to get complicated, I'll try and be clear as possible. I've changed the names.

My mother has four siblings, two sisters and a younger brother. Ten years ago her younger sister, Alice, was diagnosed with a genetic health condition called haemochromatosis. It's also known as iron overload, your body stores up iron over time and if left untreated it can cause severe tissue damage and health complications. If the condition is diagnosed early enough it can be easily managed.

Well when Aunt Alice was diagnosed she told her middle son Martin and my other aunt Rosalind, but ordered them not to tell anyone else in the family, and they didn't. My aunt Rosalind got herself tested and tested positive, and she had her two daughters get test and they're both carriers of the disease. I don't know what my cousin Martin did, but presumably he tested negative as he didn't say anything to his ex wife regarding their children. Alice's husband Cecil did test negative, though that means their youngest son, David could still be a carrier. However they didn't tell David, even years later after he'd married and his wife was pregnant.

Fast forward to 2 years ago and Alice died. I didn't know the exact details of how she died, as in our family people don't like to communicate, but she was in extremely poor health in her final years. We would have visited her but it was pretty clear we weren't wanted. At her funeral my aunt Rosalind let slip to one of Alice's daughter-in-laws, Violet, that Alice had had a genetic condition. Violet pressed her for details and found out it was haemochromatosis. Violet thought the rest of the family should know, but didn't want to rock the boat so didn't tell us, but she did at least tell David who said he'd get tested. Violet's husband Miles (Alice's eldest son) died 10 years ago, but they have two daughters and Violet got them tested, one of them tested clear but the younger one tested positive for haemochromatosis, it transpires Violet's family also carries the gene. Violet did ask Rosalind if she'd told my mother but Rosalind wouldn't give her a straight answer.

At this point Violet decided that she didn't care about rocking the boat and that this was too important to keep quiet about any longer and she messaged me on WhatsApp two days ago and told me everything I've detailed above. That evening I contacted my cousin in Canada, my uncle's son, to warn him that they all needed to get tested for haemochromatosis, no one had told them anything either. I also contacted Martin's ex wife to check if the children had been tested, she didn't know anything about it but said she'd ask him.

With regards to my situation, I've been on the phone today trying to arrange tests for myself and my mother and my son. My mother is poor health right now on account of falling down and fracturing her hip two months ago, and since the accident her mental health has taken a severe downturn, she's very confused all the time and her memory is fragmented. I remember that according to Violet, Alice showed similar symptoms before she died. I am worried sick that my mother has haemochromatosis, and that it has gone untreated until now on account of my family's decision not to inform us about it. While I was trying to organise a blood test for her this morning I had a call from my mother's carer that she'd found my mother stuck in the bath unable to get out and had to call an ambulance. My mother is currently in hospital and I'm waiting to find out if she's being readmitted, when I talked to her on the phone she confused me with Alice and was convinced that the bath she'd been stuck in wasn't in her house. If my mother has haemochromatosis, and if she'd been diagnosed ten years ago, her condition could have been managed then and she wouldn't be in poor health now. Of course she might not have it, but given both her sisters tested positive it's a high possibility.

I am furious about all of this. The level of my fury hinges on our test results, if Mum doesn't have it I'm still angry that Alice, Cecil, Rosalind and Martin kept the rest of the family in the dark about something so important, if she does have it then they have directly caused her harm.

Besides needing to vent, I also wanted to ask if anyone knows if it's possible to take legal action against them, for having withheld such vital information from us for 10 years? I'm not interested in getting money from them, I just want them held to account. They've done a lot of horrible things to my mother over the years, especially Rosalind, but this one is really beyond the pale.

My mum has haemochromatosis too ,to be affected you have have two parents with the condition ,and like all genetic conditions the impact of the condition can vary massively on different people ,yoy can request a blood test at the Dr ,s I had one and it was negative
I'm not sure what you think you can sue for or why ?

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