Does any other member of this group have Ichthyosis? - MY SKIN

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Does any other member of this group have Ichthyosis?


Both myself and my 19 month old daughter have the EHK (aka Bullous) type of Ichthyosis and I would love to hear from others with the same condition.

13 Replies

Hi Melmo

My background is in nursing and I have been researching non toxic products for some time. My fourteen year old nephew has suffered with this condition since birth. Recently I sourced a natural skincare product extensively used for extremely dry skin and gave it to him to try. He (and his parents) have found it to be the most effective skin care they have encountered to date and are delighted with the results. I have used these products to help people with eczema, psoriasis and rosacea any have had a great response across the board. I now promote theses products so please feel free to contact me directly on if you would like any further information. Looking forward to hearing from you.



ffittz in reply to jamy

hi, you say you have sourced a natural skincare product. is it on the market as i have suffered from psoriasis on my legs and hands for many years, trying all different creams from my doctor. people who suffer this condition will know it knocks your confidence and would appreciate any help on this matter,thanks

jamy in reply to ffittz

Hi Ffitz

These products are only available by mail order directly from the manufacturer. Please contact me directly on and I can guide you further.



Hi Melmo,

I don't have your condition, but I know that there's a FB group attached to the official Icthyosis Support Group. You've probably already located it, but if you haven't here's the link:

I hope that you are soon able to find some fellow sufferers. Being able to share your experiences with others can really help.

Take care.

Melmo in reply to Shell567

Hi Shell587,

I should've mentioned that I am aware of the ISG and have been since it started, but thank you so much for your reply and the info. I also run Friends of Ichthyosis, we have a few groups/page on Facebook and a wesbite too :) I am more than happy to help others with this condition here too :)

Thank you again your reply is most appreciated.

Take care


In reply to the others, I am more than happy with the treatments I am currently using for both myself and my daughter that we get from our dermatologist. Many thanks anyway


Hi Mel,

I run a FB group too - Sweet's Syndrome UK. It can be so hard to find support when you have an uncommon/rare condition.

Keep up the good work,


Hi Melmo,

I suffer from Icthyosis all my life and remained covered up for the best part of 40+ years. Now for the first time I am able to show my legs in shorts, miniskirts and dresses. What a difference to my confidence and emotions. Believe it or not it was a simple solution for me-Aloe in its purest form. The photographed results you will see I can only speak for myself, regards to the results with Aloe, but please find out more on my blog and feel free to contact me should you have any queries.

G x

Hollander in reply to Cherry1303

Hi is this aloe gel you use please or a cream ?

Cherry1303 in reply to Hollander

Hi Hollander, I use a combination of cream and gel. I am happy to discuss in greater detail.

Hi Melmo

I am a carrier of X-linked ichthyosis, and my 26 year old Son is a sufferer.

I also was seriously ill and hospitalised with Stevens Johnson Syndrome last summer.

We used to attend GOSH during the time the ichthyosis support group was first set up


I have just started using emu oil which seems to be working quite well on my feet where I have quite a bad case of eczema which I've never had before, the emu oil has been mixed with lavender which in itself is well known for its healing properties, it's very greasy (it's kept in the fridge to stay solid but melts on contact)- you have to massage it in not just rub it on top of the skin - although it seems to sit on top of the skin it slowly sinks through without you noticing, it has left my feet feeling really moisturised and has stopped the awful itching - I would recommend it to anyone!

I was wondering if anybody has ever tried emu oil before? I have been using it on my daughter for 1 year now and it is amazing. It helps keep her moist longer, reduces the itching, and has made a big improvement (along with her other lotions). The Docotors asked what all I use on her and when I said emu oil one of them looked at me and said that is great stuff how did you hear about it and how do you get it, so I told him the story. We love the stuff! I read a bit about it from a book a lady lent me and this it what it said about emu oil. Emu Oil - anti inflammatory, encourages rapid repair of damaged tissue, healing, moisturizes and penetrates multiple layers of skin - a great oil for skin disorders and allergies. I also found a artical on the net about emu oil and ichthyosis. Here is what it said. How is Ichthyosis Treated?

There currently is no cure for ichthyosis. Intensive localized moisturizing may reduce symptoms. Caring for ichthyosis is very labor-intensive - spending lots of hours every week bathing, scrubbing the skin in an effort to shed some of the scales, and keeping the skin heavily moisturized. Caring for ichthyosis is as much about looking good as feeling good.

The use of mild, non-drying soaps – such as Emu oil soaps – is encouraged. Frequent hydration of the skin is encouraged, and since Emu oil is a "tissue nutrient" and helps "feed the skin" Emu oil can help keep the skin moist and softened. Immediately after bathing, apply a generous amount of Emu oil to the skin and allow to penetrate. Then, apply Emu oil to the affected areas several times a day for added moisturization. It is all natural also so that is a plus for me. Sorry the post is so long.


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