Ocular Albinism

[Lulabell]

Hi,

Not sure if this is the right place, I've been lurking in the craft area and this is my first adventure out into the wider world of MN.

I was wondering if there's anyone who knows much about ocular albinism? My partner has it, but when I've asked he seems very sketchy on the details. He has said that it's genetic and could be passed on to his children, but doesn't know (or tell me) much more than that. I'm hoping to start a family in the next couple of years and I know that it's a major concern for him, and I wonder if that maybe why he doesn't want to research it further.

Anyway, I don't really know where to look myself, so thought I'd ask.

Thanks very much in advance!

Lulabell

Hi Lulabell
I just googled it and www.patient.co.uk has a good explanation.
It goes into detail and there are quite a few sub-variations so best to look yourself but basically it's albinism of the eyes only, as opposed to the skin and hair I think. The site discusses the differences for the different variations and the differing scale of the symptoms.

Hi luciemule,

Thanks so much for that, for some reason my search engine was only producing wikipedia as a 'reliable' source .

Thanks again,

Lulabell

Welcome was going to suggest googling but someone beat me to it. Might be worth posting elsewhere someone else out there is bound to have it. Just trying to think where ?behaviour development ? special needs. Also just saw your message about your finals try not to worry too much your parents will be proud whatever, they've allready had 3 years of telling everyone their daughter is at Oxford!! It all comes out in the wash in the end. Good luck anyway.

Lulabell - ocular albinism (AFAIK) means that there will be photophobia, which means that people who have it may have to wear dark glasses. i dealt with a little girl who had it, and she had Transitions (photochromic) lenses which helped a great deal. it may also be accompanied by a higher prescription, but not always.

HTH

Hi 1dilemma,

Thanks for that, have moved it elsewhere to see if someone spots it. I've found some info on the diagnosis and the effects but I'm really stuck trying to find out about the gentic ide, which is what my partner seems unsure about, hopefully someone will know. Also, thanks for the luck and i advice I know my parents are reasonable people really it's just hard to remember sometimes

UrbanDryad, thanks for that, my partner has photophobia, severe nystagmus and is legally blind, but concerned about putting his children through it, so I'm trying to find out how likely it is to reassure him a bit. Also, it's tough cos I know he can cope as a adult, but it's hard for me to imagine what it must be like for a child. Other than the obvious physical effects did it affect the little girl you dealt with too much?

Thanks very much!

Lulabell

There are a couple of geneticists who post on here can't remember their names try chat.

Thanks, I'll give it a go

Give a shout for Tamum. She's a geneticist.