UK Keratoconus Self-Help and Support Association

I have had KC for about 45 years but have been fortunate that it stabilised after the first ten years and I still have reasonable vision with my RGP lenses (aged 59 years). I understand the genetics of KC are not yet well understood and that it is not common for it to run in families. My family may therefore be interesting in that we now have 6 members with KC over 2 generations, although it was not known before that. As well as myself, my 2 sisters also have KC (one had 2 corneal grafts about 40 years ago), one male cousin also has it and, in the next generation, my daughter and my sister's son also have it. Is this unusual?

Hello and welcome to the forum. Having so many members of the family affected is fairly unusual. When Moorfields Eye Hospital started their study into the genetics of KC, they were struggling to find enough families with more than one generation affected, and were also interested in studying siblings with KC. I'm not sure whether that study is still recruiting and if so, whether your family would be interested in taking part? There's also genetic research going on in Belfast, and there was some research in Leeds a few years ago - again I don't know whether that's still ongoing. When we did a survey of our members 1o years ago, we found that 13% had someone else in the family with KC, so quite a low proportion.
It's good to hear that your KC stabilised early. As you know from your own family, KC varies a lot in how it affects individuals and how it progresses. And there's certainly more options for people with the condition these days. But it does sound as though your family would be of interest to any researchers into the genetics.
Anne

Hello there!

I was diagnosed with KC aged 14 and my identical twin sister was diagnosed 7 years later. I have had a corneal graft, but my sister hasn't.

There is nobody else apart from my sister who have KC and we have completed the genetics study at Moorfields. This took a lot of encouragement as my sister hates having her blood taken!!

It is good that you are coping well, take care.

Love Claire Xxx

I have KC, my brother has a very mild KC and I have a once removed cousin who has moderate-advanced KC also.

I believe I have a genetic version of KC.

hiya

Thats really interesting because i have just discovered that two of my cousins from mums side have it, they are not brothers and after recently speaking with a distant relative (mums cousins daughter) after a long time and telling her abt my KC it seems she has it too bt hers is mild... we are all in our 20s and it seems to have surfaced in the past couple of years for us all..

It is possible my family might be interested in helping with a research project into the genetics of keratoconus (see previous post - although one of them now lives in South Africa!). Does anyone know how we could find out if anyone is recruiting volunteers for a research project.
Thanks
Jean

Hi Jean,
I've just e-mailed Moorfields to find out if their study is still recruiting and will let you know when I get a reply.
Anne

Hi Jean,
I've now heard from Moorfields that they are still doing their genetics study and would be very interested in your family. I'll send you a PM with information about who you should contact rather than putting the consultant's e-mail address on the open forum.
Anne

I have recently found out that my cousin's daughter has just been diagnosed with KC

My Mother and my cousins Father are siblings (So not following single sex side here)

I grew up in Southern Africa and Cousin hails from Inverness so just about as far apart geographically and weather wise as you can get!

Ian

Hi there

My twin sister was diagnosed with KC at around 19 (now 39). Her vision deteriorated and she's had transplants/grafts in both eyes. I too have KC. My niece has had her eyes tested and we're still waiting to hear if she has KC.

Best wishes

Caroline