Albinism

[AutumN]

Does anyone know if there's anything available for someone with albinism? One of my Optician's got a call from a mother that is looking for something for her 5 year old with albinism. There is no Rx involved, just for brightness. One of the labs we work with suggested a corning medical optics lens, which I thought was strange since they're more for low vision and brightening things up, not down.

The only thing I would think is maybe a tinted transition lens -- would provide some shading indoors and darken outdoors for convenience wise or just a plain pr of polar shades. Any other ideas? Thanks.

[chip anderson]

Corning 500, 550 etc. are best in a spectacle lens. Better yet one of the WJ centrally clear, peripherally opaque contact lenses would be a good cheap solution.
Don't think transitions would be as good as corning but it's a whole lot less expensive and wouldn't hurt.

Chip

[AutumN]

I thought the corning lenses were for low vision--AMD, COAG etc. to brighten things up. Wouldn't that be more uncomfortable for someone already very light sensitive or will the lower glare out weigh that?

[chip anderson]

Not if you filter out the offending wavelengths and retain the ones helpfull to a de-pigmented retina. No lens transmits more light that enters it, especially no tinted lens.

Chip

[Ian Jordan]

To determine optimum tint in clinical conditions it becomes necessary to work in three dimensional colour space, hue, saturation, brightness.

If you look at our website you can see some of the instrumentation and effects of prescribing filters accurately - and what can happen when you don't!

www.jordanseyes.com

personally I think all tints should be prescribed in such a way as to be either beneficial or neutral. Currently most people in the optical professions have little or no idea of how to achieve this and it harms many patients

[braheem24]

To determine optimum tint in clinical conditions it becomes necessary to work in three dimensional colour space, hue, saturation, brightness.

If you look at our website you can see some of the instrumentation and effects of prescribing filters accurately - and what can happen when you don't!

www.jordanseyes.com

personally I think all tints should be prescribed in such a way as to be either beneficial or neutral. Currently most people in the optical professions have little or no idea of how to achieve this and it harms many patients

Ian, your work seems very interesting, do you have any papers or info you can post on a seperate thread for the eyecare professionals, would love to learn some of the simple techniques and incorporate it in our everyday work.

Thanks in advance,

Ibrahim

[kaesmann]

Does anyone know if there's anything available for someone with albinism? One of my Optician's got a call from a mother that is looking for something for her 5 year old with albinism. There is no Rx involved, just for brightness. One of the labs we work with suggested a corning medical optics lens, which I thought was strange since they're more for low vision and brightening things up, not down.

.

Nearly no-one with albinism, especially children, has "no Rx involved". The majority of children are hyperopic (65%) with astigmatism of over 2 D (85%), a quarter of the children is myopic (numbers from a cohort of > 500 persons with albinism 80% of them children). Therefore a correct refraction (which is difficult, as retinoscopy in hypopigmented nystagmus persons is a challenge!) is essential. A correct and EARLY (4th month of life would be ideal) Rx helps the development of vision in spite of the hypopigmentation a lot and dampens nystagmus.

Concerning tint / light protection: Corning glasses deprive the already visually impaired albinist from a quality of vision which is (up to now) not defect: colour vision. So please do not think about giving Corning glasses or other special filter glasses used in retinal dystrophy / cone dystrophy / rod-cone-dystrophy like RP.


In my experience it is best to start (baby) with 2 pairs of Rx glasses: 20% absorbtion, grey, for inside, and 80% for outside. As soon as the children can communicate their likes and dislikes better, one can go up or down with the absorption. In a 5 year old child I would as well think about variable glasses – phototropic glasses, from 20% up to 90%, as they tend not to become as dark as pure sunglasses. Parents need to be informed about the temperature sensitivity of the phototropic effect and about the waning off of the effect. And, in Germany anyway, about the fact that phototropic glasses are not paid for by insurances, while they do pay for the 4 pairs of light and dark glasses (not the spec frames, however).
Parents should as well be informed about NOAH, the National Organisation for Albinism and Hypopigmentation in the US and about the Albinism Fellowship in the UK.

For literature see my webpage.



Greetings,
Prof. Dr. Barbara Käsmann
Paediatric Ophthalmology and Low Vision
University of Saarland
www.albinismus.info
Medical Advisor to NOAH Germany

[chip anderson]

Thank you Dr. Kasmann:


It's nice to have postings from someone who knows a subject which we opticians should be expert on and are not.

Chip

[AdmiralKnight]

And this is why I love Optiboard! :D

Great info, kaesmann! Thank you :)

[Ian Jordan]

It was interesting to see the suggestions of how to prescribe tints for albinism. However the suggestions made were still just guesswork and experience - and to some extent hope.

It is possible to prescribe tints accurately for albinism - the method suggested was guesswork - and it needn't be. Tint prescribing can be scientific - objective and subjective methods are possible - and whilst the tints suggested may be helpful, and probably better than most - they could not be described as the optimum as the precribing method is essentially trial and error.

I agree that tints for different retinal conditions require different tints but obtaining optimal retinal functionality requires testing - not guesswork.

[AutumN]

Thanks all, you've been a great help.

[harry a saake]

Dr kasmann, especially interesting and very well presented, from one german to another, could you write us on optiboard here, some more topics on this subject that you are so well versed in.

My fellow friend and baseball card collector is Dr. Bruce Alpert M.D. cheif pedriatic cardiologist at memphis state tennesse university, and he is very interested in this subject, Aufwiedersain

[kaesmann]

Dear Ian Jordan,

I do in fact know about "accurate prescription of tinted glasses" - and I even do it :bbg: - in persons who are able to cooperate adaequately.

But my main posting point was: albinism is a CONGENITAL condition where one can influence the visual development - in spite of the visual handicap - by correcting refractive errors and providing light protection EARLY.


You wrote:

However the suggestions made were still just guesswork and experience - and to some extent hope.

It is possible to prescribe tints accurately for albinism - the method suggested was guesswork - and it needn't be.

Tint prescribing can be scientific - objective and subjective methods are possible - and whilst the tints suggested may be helpful, and probably better than most - they could not be described as the optimum as the precribing method is essentially trial and error.

I agree that tints for different retinal conditions require different tints but obtaining optimal retinal functionality requires testing - not guesswork.

I think your naming it "guesswork" does not really hit the point.

One could call it experience.
And the knowledge, after 15 years of continuous care for albinists, that EARLY correction and EARLY light protection does help to achive a better visual acuity.

Very often and to my dismay I have seen children with congenital visual disorders who have not received any correction - be it due to the lack of knowledge, or due to the lack of experience in static and dynamic retinoscopy in young nystagmus patients (which is difficult). Perhaps it is different in the UK and US, but I doubt it - from what I gathered from families during albinism meetings in the UK and the US.

Even my prescribing of tints may not be "scientifically accurate" in babies and children (how can ist be?? perhaps you could tell me?) this will not lead me to passivity and to not prescribe anything because I am not 100% sure it would be the optimum for the child.

Greetings,
Barbara

[kaesmann]

Hello,

how comes this:

My fellow friend and baseball card collector is Dr. Bruce Alpert M.D. cheif pedriatic cardiologist at memphis state tennesse university, and he is very interested in this subject, Aufwiedersain

- as a paediatric cardiologist??

Greetings,
Barbara

[RGC_man]

Discussed in less detail here:

http://www.optiboard.com/forums/show...light=albinism

[optiboarder]

...
In my experience it is best to start (baby) with 2 pairs of Rx glasses: 20% absorbtion, grey, for inside, and 80% for outside.

My MD recommends 30% /70% ratio.

[kaesmann]

Hello,

the amount of tint of course depends as well on where they live. My patients usually are from Germany and adjacent countries, where sun prevalence and light intensity are only moderate . If I had californian, new mexican or australian patients, I would probably as well start with 30% for inside. I am wondering, however, about the 70% for outside - this would probably not be enough in bright countries.

I had 2 or three children where parents told me that the 20% for inside were not enough (all were OCA Type 1A - the one which forms no pigmentation ever) and when I gave 30%, I had to reduce it to 20% again as they disliked it and took the glasses off - probably a contrast vision problem.

Some years ago I tried to match the tint to the type of albinism: no pigment formation, a bit, moderate, and good pigment formation --> deep tint to moderate tints. I learned by time, however, that glare sensitivity is something VERY individual to each patient and does not really clearly correlate to the severity of albinism. Starting off with the 20% / 80% version seems to work with 90+% of the toddlers, and of course can be modified once they are old enough to cooperate and tell their likes and dislikes.

Greetings from a dark, rainy, and cold Germany,
Barbara

[Dougfir8]

I was a vocational rehabilitation counselor for the visually impaired in one of my previouis careers. My experience with albinism in adults meant the individuals were legally blind. I wonder if current knowledge and practices are helping prevent blindness among that population.

[chip anderson]

Some albinos see well, some see well with correction, most do not. A great many have nystagmus.

Chip