Shared Information and Friends Profile Page

 

RJ changes his creams and diet for a possible brighter future!

Above- RJ the little cheeky chap hopefully found a cream to help with his Netherton's can it help others.

Valerie Jackson got in touch through our facebook page Netherton Syndrome Research Group-  Her Son RJ has been diagnosed with Netherton's recently and has been advised to try a cream. (Remember we are only telling people what others have tried and you should always talk to your doctor before trying anything new) Theyhave been prescribed LAC-HYDRIN/TMC/VELVACHOL a cream to help with his itching and it seem to be working which is great news. Its been used on another girl in here teens with ichthyosis.

Please leave us a comment on the facebook page if you have any other ideas that we could share with out visitors to the site.

 Meet Brian Bennett- from SkinSure International

Brian Bennett is the inventor of the SkinSure range of creams and Technical Director at SkinSure International Limited, a company formed to acquire the formulations and patents, operates from Park Royal, North West London.

 

In 2003 Brian from Nuneaton,Warwickshire first started selling a formulation he had invented for people with dry skin problems such as eczema and dermatitis. Heather, his wife had been very badly troubled with contact dermatitis and was struggling to continue working in the early 1990's because her hands were so sore and cracked. He put together a skin cream for her and after 4 days the cuts on her fingers started to close. Within 14 days her hands had completely healed. It was Heather who encouraged Brian to produce and market his formulation so that others could benefit.

Brian says:

The cream I made for Heather's hands is now sold as SkinSure Plus. It is an intensively moisturising antimicrobial skin protector, and over the last six years over a million customers in the UK have tried it. It gives me a real thrill to hear from so many people who have taken the time to contact us to express their gratitude and give testimony to the difference SkinSure Plus has made to their quality of life. It is now sold all over the world.

I developed a second product, SkinSure Ultra for situations where skin infection is the main problem. So many people who have exhausted conventional treatment for infections such as MRSA, have found Ultra to be effective. MRSA carriers have also found that they can clear their skin from colonisation by applying SkinSure Ultra with a little care, as I advise.

Meet our friend Les Avakian

We have got another profile from aboard and this time its our friend who for a long time been working hard to network the Ichtyosis group of skin conditions and set up FIRST (Foundation for Ichthyosis and Related Skin Types). 

Hello everyone. thank you for letting me write a short story about my association with FIRST. I have one of the milder forms of ichthyosis,X-linked, and I am just one of many devoted members of the ichthyosis community. In 1982. I attended my first ichthyosis chapter meeting in Fresno, Calif. and met a little girl who had lamellar ichthyosis. She showed me I wasnt the only one affected, and introduced me to so many big hearted people who wanted to come together. My thrill now is to network ichthyosis people around the world and our connections have led to the Chinese Ichthyosis Association, almost 200 members in Australia, the European Ichthyosis Union, the ISG, Eurordis, members in South America, Africa, and the Middle East. In 2000, I attended our Philadelphia Natonal Ichthyosis conference and was thrilled to meet Maggie and Mandy Aldwin from Reading, England. They are very involved with the ISG and the European Ichthyosis Union. I am very encouraged by your involvement with the ISG and the Netherton Syndrome Awareness Group, and I hope we can bring your enthusiasm to everyone.

Thanks Les and for more information on FIRST please visit the website below.

F.I.R.S.T WEBSITE

 

"QUEEN OF SOCIAL LIVING" Carly Findlay.......... TAKE IT AWAY CARLY!

I am a 20 something Australian woman living with ichthyosis form erythroderma/Netherton's Syndrome. I work full time, study part time, am freelance writing, volunteer as a mentor for young people with a chronic illness, and have just been recruited as a volunteer tv presenter on a show for people with disabilities on an Australian community tv station.

My skin has improved a lot since I became able to manage it myself. When I was a child and teenager I spent lots of time in hospital, and didn't handle the stares, comments and teasing well. Now as an adult, my hospital stays have reduced considerably and I've learnt to cope with the social challenges.

I love life and take every opportunity I can. Having ichthyosis can be difficult, but can also present so many wonderful things. If it wasn't for being red, I may not be as recognised and remembered, and wouldn't have the innate ability to influence people the way I do now.

I have a blog where I share stories about what it's like to live with this condition. I hope it makes a difference in educating my friends, and strangers about it, and also to offer hope to others with the ichthyosis and other disabilities.

You can read my blog at http://carlyfindlay.blogspot.com/

 
 
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