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My father (now in his 70's), myself and my son all have ichthyosis vulgaris.

We also all have Vitamin D deficiency.. and I'm talking way way down from what the levels should be. Is there a link between the two?

Maybe the sunshine can't get through the thick skin to produce it internally???

It seems to be a common problem. My spouse and kids have ichthyosis en confetti and my spouse developed Mystery Sleeping Sickness a couple years ago. After about 6 months of thyroid tests and sleep studies, they finally figured it out and put her on a megadose of Vitamin D. Problem sorted.

Later, I mentioned it to one of the ichthyosis research doctors at a meeting, and he said, "Why didn't you call me? Vitamin D deficiency is very common among ichthyosis patients. I could have saved you a lot of trouble."

It seems to be one of those things that is easily overlooked unless you have a doctor that has a lot of experience with ichthyosis.

My doctor didn't associate the two, I did! I figure that I can't do outside in the summer because of the heat (I live in Kentucky but am originally from England) so I can't get the vitamin D from sunshine. Mega doses of the meds do help. Its fortunate that with such huge doses that the pills don't weight 2lbs each

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Ichthyosis Support Group

Vitamin D deficiency is relatively frequently found in association with ichthyosis. It is a complex topic, and not well understood. Contributory factors include the tendency for patients with ichthyosis to keep the skin covered, and therefore to be less exposed to sunlight, and the impaired production of vitamin D by ichthyotic skin following a sun-exposure.

It is true that not all medical practitioners will be aware of this susceptibility of people with ichthyosis to low levels of vitamin D, and it is difficult to judge on the basis of symptoms, so it may be worth a gentle enquiry about the possibility of having a blood test!

Hi,

You may well be right - research suggests that the hyperkeratosis (thickening of outer layer of the skin) associated with ichthyosis DOES have a negative impact on the body's ability to produce vitamin D following sun exposure. Since sunlight is our main source of vitamin D, this makes it highly likely that many sufferers will be vitamin D deficient.

Another factor is that ichthyosis affects the body's ability to metabolise fats - as vitamin D is a fat-soluble vitamin, it seems likely that people with the condition may have problems metabolising vitamin D.

I agree with Dr Glover - I'd tell your GP/s about your concerns and ask for blood tests; if these confirm your suspicions your GP/s should prescribe all three of you a suitable vitamin D supplement. You could also try to ensure you eat plenty of vitamin D-rich foods such as oily fish, liver, eggs, milk, butter and foods fortified with the vitamin such as margarine, cereals and powdered milk; remember though that sunlight is our main source.

I hope this helps

Wendy

What does it mean, on a day to day basis, that ichthyosis affects the body's ability to metabolise fats? I have never heard that before and am wondering how that would show itself in my son's normal bodily functions. I ask because sometimes it takes a long time for him to go to the bathroom, and he is only 8 years old. Also sometimes he will suddenly take on a very strong odour, like its coming through his pores or something.
Also, I am wondering what are the symptoms of vitamin D deficiency?
Thank you