UK Keratoconus Self-Help and Support Association

Hey there!

Ok ... most of you know that John and I are now married (eight weeks!!) and are hoping to have children in the future. It is slightly worrying to me though as we both have KC and I was diagnosed with MS a few years ago. None of this really bothers me now as we cope very well, but all of a sudden you start thinking of children and looking into genetics. Are we likely to give a child these diseases as well? We would be prepared and able to support them if that was the case but I don't think that anyone really knows at this stage if we are going to pass KC on? You do start looking into how can you help them in the future if they do have something?

Collecting and storing cord stem cells is very expensive but could this be something that new mothers with KC will think of? Is there a chance that these stem cells could be used in time to help with KC if their child was diagnosed with it? I am sure that there are so many other things to think of with children, but if both parents had one condition would it make sense to plan ahead and collect these stem cells in case they are needed? What if in the future a cornea could be grown KC free??!! While we are all thinking of today,technology does move on. Who knows what could be ahead of us and what we will be basing a conference on in say thirty years time???

Hehe ... just wanted to ask what you all think? Thanks for listening!!! Loads of love, Claire X x X

Claire

Your children will be fortunate to have such considerate parents.

As to MS I think that some research does indicate a the possibility of a genetic link, but this does not mean that MS is a genetic disease, as the effect is not directly causal. As I understand it, people with MS have a slightly changed form if the IZ7-R protein that misdirects T cells to attack the nerve tissue. The expression of Genes is subject to a number of factors and, as you know, there was a great deal of discussion about the possible connection between MS and a virus.

Anyway, you also know that I am far from convinced that KC gas a genetic cause. Someone here found some research recently that supported my view

So, whether to harvest stem cells in order to make available some yet-to-be developed treatment therapy in the future? Only John and you can make that choice, but the fact that you are even thinking of it already tells you something about the sort of parents you will be: exceptionally good ones!

Every good wish to you both; you have already supported and helped countless folk here (myself included), and every blessing as you face situations and make decisions in your future.

Andrew

Loopy Lou put a post with a link to the BBC web site about stem cells curing a corneal condition, I have since contacted the author with my idea of expanding their research to KC based on how a DALK and CXL are performed. They were very interested and past the idea onto another consultant interested in stem cell research and who is knowledgable regarding KC.

So who knows by the time any child you have is at an age where KC would show up, stem cells may eb a viable option.

Plus consider this, do you need your own stem cells to fix a corneal problem? After all rejection is from the endothelium rather than the stroma or epithelium. So if stem cells from anyone just like we do with most grafts with the idea I put forward to the researched mentioned above the epithelium would be removed and a bandage lens with stem cells used to introduce them to the stroma. Just like a DALK the chances of rejection would be practically zero.