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Cure New treatment for Dariers Disease

Souleiman Message
8 Jan 2011, 04:54 AM

hi to all. i am 35 years old and i have had Dariers Disease DD since i was 9 years old. i was born and raised in the United Kingdom but my origin is North Cyprus, my mum has DD aswell and she has been battling with it since she was a little child too and she is almost 60 now therfore I consider myself an expert on DD. i have tried all the medication and all the treatments there is. to me and my mum and finally i have found the treatment that actually works. i have the worst case of DD in london uk and most dermatologist doctors that i have seen have told me that its the worst they have seen in the world. the whole of my back and the whole of my front is covered starting from the groin all the way up to the top part of the back of my ears, and its the bad flakey and smelly version all over, some around my scalp and very bad behind my kneecaps, my hand and feet and most of my leg is ok and my face is clear too just a little around the forehead but my neck is completely covered. i am using every day 3 times a day tablets called ACICLOVIR + METRONIDAZOLE + FLUCOXACILLIN ANTIBIOTICS + TRAMADOLL PAIN KILLERS Also i use an ointment called 50/50 liquid parafin and i mix into it 100g of BACTROBAN. this system has helped me not commit suicide for the last 5 years of my life. but now i have seen a doctor all by chance when i attended a medical seminar and the doctor offered to treat me on a new kind of laser treatment. the doctors name is DR NEIL P J WALKER at oxford hospital england uk.now dont get confused with the old lazer treatment i tried that its painfull and it doesnt work. This new laser treatment is done under local anistetic so you dont feel a thing. when you wake up it is a little uncomfortable for a few days but the outcome is %100excellent. my back is almost complete and its clear and perfect skin just a little light in colour no marks and no DD its the most happiest days of my life for the first time since i was 9. the treatment is still going as he can only do a maximum of roughly 4 inch by 6 inch area at a time and a 6 week rest inbetween each treatment. as i said before my back is almost complete and last week for the first time my wife gave me a back massage which felt great.i still use the above mentioned pills and medication due to having still the rest of my body but we hope by the end of the new year the treatment will finish and i can stop all medication. also its been almost 3 years since we done the test patch on my stomach and there is no sighn of DD on the test patch so therfore this treatment is working so far. I know how difficult this disease is so i have decide to join all the DD forums and tell all the sufferes about this treatment so that if they can get it it does change there life. it certanly changed mine. i will be checking up on this site from time to time so if anyone has any questions please ask and i will answer thank you
Gaby Message
16 Sep 2011, 10:35 AM

Hi :) I am Gaby and i'm 17. Thank you so much for sharing this story! I was wondering if there is any sort of website for this new laser treatment? If not, could you please e-mail me the phone number of the doctor you saw so i can get in contact with him. My e-mail address is gaby.manley@hotmail.com Thank you.
mario111111 Message
10 Dec 2011, 04:32 PM

Hello Everyone, Can you please join the Facebook page for Darier Disease.. The page is called : Darier's disease, let's know each other!!! http://www.facebook.com/group.php?gid=52449648019 and please Souleiman can you share your experience on facebook... Thanks a lot!!!
JoseManuel2 Message
14 Oct 2012, 01:48 PM

Dear Souleiman. I apologize for my English. I’m from Chile and I was diagnosed five months ago Darier’s disease, the medication I use to treat it is isotretinoína, but only serves to contain it, let me know how your treatment has evolved until today and whether improvements are permanent over time….
Charlene Message
14 Oct 2012, 02:15 PM

I had the laser treatment done 5 times on my face. The doctors removed every inch of skin from my face. Was totally put under with the anesthethic. My face was swollen to about three times its size for about a week and was covered with a very thick coat of petroleum jelly for about two weeks after which I was bright red for about 3 more weeks. The smoothing effects lasted for about 6 weeks and my plastic surgeon suggested I have it done again. This therapy was repeated 4 more times. The disease returned and the doctor said my DD was not any better than before the treatment. Talked to my geneticist and she said that everyone's DD is different and what works fabulously on others may not work on you. We keep trying. Next it's the hyperbatric chamber-at least it doesn't hurt.