Why blog?

When my son was diagnosed many years ago the Internet was not readily available as it is today. Information on albinism was sparse and we had to feel our way with snippets of information gained from here and there, feeling frustrated that as a health care professional the only information I could find related to lack of pigment and nothing advising us on his long term vision prospects and how best to meet his needs.

This is an informal, personal view of the hurdles we have faced and the strategies we have adopted to help our two children with albinism. Our children have straightforward Oculocutaneous Albinism, probably type 1b and have a moderate visual impairment. We are a white, fair skinned family so we may not face all the issues some of the rest of you are facing but I hope you find the odd gem useful that makes the difference. I decided to share strategies for problems resulting from albinism that mattered to us – you know the sort of information and ideas that we wanted to know about to help our children but have had to find about as we went along. I simply had no idea of a lot of the difficulties my children were experiencing and continue to be amazed that despite the knowledge I now have with Albinism matters, we still discover situations the children cope with unaided that are improved dramatically with some very simple changes.

Just as Albinism differs from person to person, albinism matters differ too. What helps my children may not be the solution you were looking for but if my blog raises your awareness of Albinism matters or provides you with ideas that can be adapted to your situation so that another child with albinism (or their parent) has benefited then all the hours spent compiling Albinism Matters has been worthwhile. A huge proportion of Albinism Parenting is realising the problems that exist in the first place as our kiddies are so good at adapting and coping that we are not always aware of what is really happening under our noses.