Hereditary

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Annie
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Hereditary

Postby Annie » Sun 15 Nov 2009 5:02 pm

Hi, not been on the forum for a while. My son had his corneal transplant back in July and is doing great so far. He travels once a month to London to have his eye checked. He still has his stitches in and is on about 4 different drops a day but he says his sight in that eye is improving all the time. Now to my question. His son, my grandson, who is only 3 had his eyes checked and the optician seems to think he might develop Keratoconus. He said it is herditary and he will check his eyes every 6 months. My son developed KC when he was in his 20's, he is now 32, but he is the only one in the family with this condition. Is it hereditary?

Annie

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Anne Klepacz
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Re: Hereditary

Postby Anne Klepacz » Sun 15 Nov 2009 8:31 pm

Hi Annie

It's great to hear that your son is doing well. Do give him all our best wishes.
As for your question - researchers think there is a genetic factor in KC, but that's not the same as it being hereditary. Moorfields have been doing a study into the genetics of the condition for which they were looking for families where it was present in more than one generation. And they had problems finding enough families like that for their research. I'm not good on the science, but it's a condition where it can skip generations and only about 15% of people with KC have anyone else in the family with it. The findings from the Moorfields study haven't been published yet, but it looks as though it takes several genes all coming together for KC to develop. So while it's not impossible that your grandson might develop KC, the chances are that he won't. But it's good that the optician is aware and 'keeping an eye' on him. And of course, with the amount of research into KC now, and new developments coming along all the time, in 10 years time there may be all sorts of new treatments.
Anne

Annie
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Re: Hereditary

Postby Annie » Mon 16 Nov 2009 9:45 am

Thank you Anne for your best wishes and for your reply. Hopefully my grandson won't get KC.

Annie

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Andrew MacLean
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Re: Hereditary

Postby Andrew MacLean » Mon 16 Nov 2009 10:18 am

For myself, I have never been persuaded of the heredity argument. I know that some researchers think that there may be a genetic link, but even if there is such a link, it clearly has to be linked with other cofactors to be activated.

The problem with the heredity argument is that it makes us all victims of a capricious fate, whereas if more time and effort was devoted to the discovery of environmental cofactors we could learn what action could be taken to prevent the development of keratoconus.

Your grandson is now in a difficult position. He may never develop keratoconus. If he does develop keratoconus he may never need any surgery of any sort, and might even be able to cope without contact lenses. But, having this early warning he may find it difficult to enter some professions as an adult and even find it hard to get medical insurance.

Andrew
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Sweet
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Re: Hereditary

Postby Sweet » Mon 16 Nov 2009 2:22 pm

Hi there, so glad that your son is doing so well post graft!

I was diagnosed at 14 and started wearing lenses while my twin sister was diagnosed with the condition seven years after me. I had a graft four years ago as I have only had good vision in one eye and couldn't tolerate any lenses in the bad eye. My sister hasn't had any surgery and manages very well with lenses. Being identical twins there will be a higher chance of us both having KC.

We also have a brother who is three years younger than us who is fine as well as a 16yr old younger sister who I have been taking to get checked and she is ok as well.

My sister and I did take part in the Moorfields genetics study and look forward to the results.

I am now married to John (the webmaster here) who also has KC and has had a lot more grafts than me! We are expecting our first child in Feb next year and will be getting them checked out. We did discuss having children and what if we passed this condition onto them, but thought that we will be able to support them and help them through it so hopefully it won't be a problem if it happens. I have MS as well and am more worried about passing this on as KC can be very well managed.

I would just take it easy and hope that it isn't genetic which most optoms and my surgeon agree isn't the only link. There are other factors as well which haven't been highlighted yet. Hopefully in time research will find out the cause. Hoping that your grandson doesn't get KC but if he sadly does he will get a lot of support from your son and with this site.

Love Claire X x X
Sweet X x X

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GarethB
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Re: Hereditary

Postby GarethB » Wed 18 Nov 2009 12:04 pm

The issue with the genetics theory is that unlike eye or hair colour KC appears to be the result of a certain set of genes coming together.

Having watched a study on identical twins on the TV a month or so back, they asked why identical twins can develop different conditions when they are brought up the same and genetically idnetical.

The study showed evidence and concluded that environmental issues play a part as the twins that developed conditions such as cancer and obesity lived in different areas of either the same coountry or parts of the world. Which gives weight to the fact that KC may be heriditory but no guarntee that you will get it, just like we accept with famillys that have a history of cancer. There might be a pre-dispositio to develong KC.

If you were to trwal through all the posts on this site you will find people citing environmental factors such as eye rubbing, other allergies, trauma and so on. Being on the asthema society site you get similar things weher people have other alergies, had some form of trauma to the lungs as a child and so on. Very similar discussions, just different condition.

Without funding for a national study whereby at our next appointment we have a blood test and take a members of the familly so they can have a blood test so we have results from a huge study it will be sometime before we know.
Gareth

Annie
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Keratoconus: No, I don't suffer from KC
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Re: Hereditary

Postby Annie » Wed 18 Nov 2009 12:41 pm

Thank you for all your replies. At least my grandson has a good optician, who will monitor his eyes. He already has to have glasses so he will be regularly checked.

Good Luck Claire for your baby and I hope everything turns out fine.

Annie

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Re: Hereditary

Postby kitty kat » Thu 19 Nov 2009 9:20 pm

glad your son is doing well. myself and my older son both have keratoconus and have been told its not hereditary, my younger son is coloured blind and so far no signs keratoconus, keep up the regular eye checks

24kblue
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Re: Hereditary

Postby 24kblue » Mon 30 Nov 2009 10:29 am

Hi Annie

I have keratoconus, my identical twin brother doesnt so it is not necessarily heriditary.

hels229
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Re: Hereditary

Postby hels229 » Fri 04 Dec 2009 6:01 pm

I have kerataconus which was diagnosed when I was 23. My father was also diagnosed at 23. He had his first graft aged 38 (in the absence of such things as x matching and intacs in those days). I am now 38 and need either intacs or a graft asap. I started KC in my right eye aged 23, as did my father and it was first noticed in my left eye when I was 25 - the same as my father. Despite this, and attending both nhs and private clinics together (mainly due to the curiosity of consultants as to this father and daughter combo) we have been told by MANY surgeons that this is absolutely NOT hereditary!!
I am also allergic to certain types of general anasthetic, exactly the same ones as my father and have a joint condition - exactly the same as my father yet these are hereditary??

I guess no one really knows yet, but what however is in no doubt, is the authenticity of who my father is!!

Interested to hear any similar stories like mine


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