Having children when one has debilitating keratoconus

[tuan]

My son has severe keratoconus which began when he was 12. A hydrop developed. At 18 he had a corneal transplant in one eye. With corrective glasses and special scleral lenses, he drives and studies. He’s now 25. Believing he may one day lose his vision fully, he stopped his Literature degree as impractical and has begun Massotherapy training courses so that he can do something for others even without sight. There is no record of keratoconus in our families, otherwise. The genetic connection for retransmission to the next generation is being studied but seems inconclusive so far, although there are hints there is a connection. He says he would like to have his own children but has decided not to because he wouldn't want to pass such a difficult situation on to his children. He feels he wouldn't be responsible in having children, yet, he would make an excellent father in my opinion. A dilemma. What can be said? Are members planning on, and having children, or not? I don’t see an easy answer.

[Andrew MacLean]

Welcome to the forum

I am sorry that your son gave up his course. It is very rare for people with keratoconus to lose their sight. I did but now I see very well after transplants into both eyes and a lens implant into one eye. I wear a contact lens on my other eye and also wear glasses, but I can see well enough to drive.
Most people with keratoconus get on well with contact lenses and/or glasses.
As to the question of whethe ror not to have children, my question would be 'why not?' There are indicators that keratoconus may have a genetic trigger, but there is no evidence of whether this is on the DNA we inherit from our father or on the mitochondrial side.
I know couples who both have KC, but their children (both now grown up) show no sign of the condition.
I'd say that your son should have no worries about his offspring having KC; even if they do I am sure that they will cope well.
Every good wish.

Andrew

[tuan]

Thank you for your reply, Andrew. Yes, that may lessen the chances of retransmission if keratoconus has a mitochondrial rather than a male-DNA genetic link.

I was thinking that, given the constant miniaturization of microchips and cameras, and the projected evolution of the cellphone next towards incorporation in eyeglasses (A HUD = Heads-Up Display as in fighter aircraft) , that, with much work, it might be possible, eventually, to develop a set of curved glasses with the camera surface facing out to the world to capture a panorama which would then be transmitted to a video display on the inside surface of one-way mirror glasses. This video display could be finely attuned mathematically to the corneal tomography of the wearer so that the distortions in vision would be dealt with by the programmable display produced on the inside surface of the glasses. My son has a set of eyeglasses which are essentially about seven sets of different eyeglasses melted down into one set. These might be replaced by such a camera and programmable interior display and have much greater possibilities for giving a truly clear view.

As well, it may one day be possible to hang a miniaturized projector onto, or in replacement of, the lens inside the eye and have it trained and focused on the retina. This internal projector would receive IR signals from a miniaturized, external, eyeglass-mounted camera.

[space_cadet]

I am currently 36 weeks pregnant with my 1st child, my KC has left me from being diagnosed to legally blind to the here and now of today in under 3 and a half years, I am determind not to allow KC prevent me from life long dreams, I gained my undergraduate degree, currently doing a part time masters degree, yes it isn't easy but my personal view is if i allowed KC to dictate what I can and can't do then it has won, yes things may take me longer or have alternative routes to them to the ones initally thought about, but they will still be achieveable if i put my mind to them enough.

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