Do you cope? Mentally, I mean.

[DakCB-UK]

FH brought me face-to-face with my own mortality when I was very young. Depression is listed as a side-effect of statins. FH may be inherited by my children: would I wish this on anyone? Life is a terminal illness with 100% mortality.

I'm prone to bouts of the blues (like today, for example) and I'm pretty sure that I've been near the brink of a few psychological problems, but knowledge is power, my mind is my own and I cope. More or less. Do you cope? Any tips on coping?

Or are you fine and think this question is all a load of touchy-feely bull?

[Aliwally]

Definitely not touchy feely bull. I couldn't agree more with you about facing up to your own mortality.... the French have a poetic word for it, but can't remember what it is.

I think the psychological aspects of any genetic disease are very overlooked, what could be worse for any parent to pass something on to their children. My daughter was left severely disabled by a neonatal infection passed from mother to baby. The guilt was devastating at the time but now I just know the circumstances were beyond my control...bit like our genes.

Good news, FH entirely treatable and we have Health Unlocked!

[Mike262]

I'm an optimistic person overall, but do get some days when I feel low.

I am lucky that despite my medical problems I am still able to exercise even if its at a lot lower level that before my heart attack. I was a runner for twenty odd years and subsequently have been cycling(trail mountain biking) and swimming for the last 5/6 years. Whilst I wait for my operation in mid October I am swimming three times a week and doing the occasional steady bike ride on the canal tow path. Working with the cardio rehab team I can exercise providing I don't let my heart rate go over 130bpm and this maintains a level of fitness and mitigates against depression.

I think its important to remain positive, but may be I suffer from an ability to kid myself this isn't really happening to me! However I have to confront it when I have a medical or hospital appointment and deep down I am aware of my own mortality.

[Seahorse]

I get very down about my diagnosis and a lot of the time wish I'd never asked my GP for a cholesterol test 16 years ago. It's like a dark cloud hanging over my head. My two kids aged 12 and 8 have also recently been diagnosed and I was devastated about this. I feel so guilty. I feel they have been robbed of a carefree childhood and now have to attend a metabolic clinic where they are the only two FH patients and have blood tests etc. Their consultant says they are very lucky children because we know they have the condition but I find it difficult to see it this way. After all, this is going to affect the rest of their lives and without a diagnosis they may well have lived to a ripe old age in ignorant bliss. I then feel guilty because there are people out there with terrible health conditions. We are all going to die of something and I have read that people with FH are less likely to get cancer so if the heart disease doesn't get us then just maybe we could be still kicking round at 110!!!

[DakCB-UK in reply to Seahorse]

I didn't reply to this at the time, but rereading this I now want to add: I was diagnosed about that age and never blamed my parents or felt that I was robbed of a childhood by the hours out of school travelling to a faraway hospital with no breakfast to get a fasting blood test and see a specialist (lipid clinics were rarer then).

In hindsight, I almost value those times we faced this together (only one of my close family didn't have FH) and they give me strength to face this alone more often now (my appointments now don't really fit with relatives' schedules).

Your children might have lived to a ripe old age, or they might not have made it to 35 - we'll never know, but I hope they appreciate the care you take of them.

[Hidden]

I really think it's worth putting things into perspective. My cousin has a Down's baby and is going to need care for the rest of it's life. There are people with both mental and physical disabilities that actually impact on their life now. FH simply means your risk of Heart Disease is increased over the rest of the population. The question is - by how much. As in a separate post, I discovered there are figures for this and it's much lower than you may think.

A study was done based on UK patients through the Simon Broome Register (owned by Heart UK) that tracked approx 500 people with diagnosed FH. In the 20-39 age group, over 10 years, and without statins, there were 6 deaths out of 216 people. In the 40-59 age bracket, there were 8 out of 257. In the 60-74 bracket - there were 1 out of 75. These are all people with diagnosed FH. The study actually concluded that once someone with FH gets to middle age, there is no difference between them and the rest of the population in terms of risk of CVD.

My view is - yes, it's not nice to be diagnosed with a particular condition but there are far worse things that could happen and put into the perspective - the increased odds are not really that bad (to my mind anyway).

Finally, just having FH doesn't physically or mentally stop you doing anything you want unless you choose to make it so. I guess because the condition is so invisible - it's up to you how much you let it affect you life.

[Iona_Roberts]

mine's a different story - my husband has had a triple heart by-pass at the young age of 42! during a blood test for one of my daughters she was told she had a cholestrol level of 13.1!! this at only 11 years old! the gp quickly tested the rest of the family. i am fine, my other daughter now 15 also has high cholesterol level, both have now been diagnosed with FH! i do feel guilty for them as it has been a lot for them as well to deal with. their consultant has said they are very lucky to be diagnosed at an early age. both have had problems with their statins - one is on 10mg the other on 20 mg of atorvastatin.

i do feel it is a lot for them to deal with at a young age especially as they cant see the illness and it is something that is with them for the rest of their lives. like seahorse i also feel they have been robbed of their childhood.

[Aliwally]

I really feel for both of you with diagnosed children, just having a blood test is an unpleasant experience for a child let alone anything else.

I suppose on the positive side, you could be saving them from a death in early adulthood and you are both acting in their best interests in impossiby difficult circumstances.

I just hope that the people who advocate all this cascade testing make sure they give support to families such as yours.

[Hidden]

i must admit ive had depresion for many years and i find it alot harder for myself now as my many illness's has taken over my life my depresion has got worse but positive thinking can help,especially if you have a good support system as with illness can come lonelyness,its good to come to terms with your mortality early on,it made things more simple for me.