This site has had a Discussion Board since late 1999. The Discussion Board is the ideal place to share any information you have on the disease, or to ask questions of fellow sufferers. We guarantee we will not pass on your details or E-Mail address to any other party, for any purpose. However, please be aware that some people farm E-Mail addresses from Message Boards and use them to send out Spam E-Mails... There is not a lot we can do about this, but so far we have not had any occurrences of this, so fingers crossed!
Here are all the 2126 Messages (most recent at the top, 20 per page)margaretl () from england, left at 16:30:14- July 22, 2006
i just cant understand were this dd resourse is going one minute i get it on my pc next no joy can some one tell me the new cite thank you.
Martha () from USA, left at 18:57:42- July 18, 2006
Hi Kelly, Sorry it took me so long to respond. I take a product called Omega Brite. If you do a search you can find their website but I think it is www.omegabrite.com. I take all 3 capsules at lunch time. I recently ran out before getting a new shipment and within a week I noticed my skin especially on my face getting dry,red, and itchy.
Cinda Cooper (firstname.lastname@example.org) from USA, left at 21:34:44- July 17, 2006
To anyone who wants samples of Detente - please contact me directly at email@example.com. I can get the samples out immediately and I want to be in contact with you as well. Your feedback is very important.
firstname.lastname@example.org () from , left at 15:2:35- July 16, 2006
TO ALL DD SUFFERS YOUNG AND OLD NO MATTER WHAT U USE U WILL NOT REMOVE THE DD SOME THINGS CAN MAKE DD A LOT WORSE WHAT SUITS ONE MAYBE WILL NOT SUIT ANOTHER PERSON I HAVE HAD RAYS ON MY FACE WHICH AS MADE MY DD WORSE I HAVE EVERY THING GOING OVER THE YEARS AND MY ADVICE IS STICK TO THE BASIC THINGS SUCH AS YELLOW SOFT VASELINE AND A GOOD FACE WASH SUCH AS SEBA MED LIQUID FACE AND BODY WASH BUT WILL HAVE TO BE ORDER FROM BOOTS. AVEENO DERMATOLOGIST TESTED OATMEAL BATH POWDER MAY HELP SOME DD SUFFERS. BUT DONT USE ANY THING WITH ALOT OF PERSERVITES IN MOST OF THEM ARE NOT GOOD FOR DD. IF YOUR DD IS VERY RED AND SORE WET DRESSING WILL HELP LINT VERY COLD IS VERY HELPFULL BUT DONT USE UNLESS U PUT SOFT TOUCH OF VASELINE ON BEFORE HAND . AND DONT FORGET ALWAYS MAKE SURE YOUR SKIN IS VERY CLEAN BEFORE HAND OTHER WISE U MAY GET CROSS INFECTIONS. GOD BLESS U ALL FROM A 68 DD SUFFER
SusanM () from USA, left at 20:27:23- July 15, 2006
Hi,Toni. Contact Cinda Cooper at email@example.com for information on Detente. Their website is www.detentednt.com. I have used it and stopped several weeks ago to see how long it would last. It is just now starting to come back in the area where I applied it. Since you are going to use it on a child, there are different instructions on the site to make sure she can use it. This is not listed as being a cure. I did see a huge improvement after using it. Good Luck!
Aaron (firstname.lastname@example.org) from USA, left at 3:4:50- July 15, 2006
I have only been taking lysine regularly for about 2 weeks to test out my theory. If it does improve the Dariers I plan to post on here about it. I am also taking biotin and ordered some silica for nail infections. I find taking an Epsom salt bath does help with my skin quite a bit too.
Toni L. (email@example.com) from USA, left at 1:58:6- July 15, 2006
Does anyone else belong to the national organization for rare skin disorders called F.I.R.S.T.? Foundation for Icthyosis Related Skin Types? I belong to this wonderful organization. They host a biannual conference over the July 4th weekend in different cities in the U.S. Along with the current information on several rare skin disorders including Dariers, they cover llamelar, harlaquin llamelar, CIE, Hailey-Hailey, EHK and other rare disorders. They also help provide doctor connections for people who need help in any area in the country. They have a website www.scalyskin.org
I went to the Atlanta conference this past July and was the only person there who has a child with Dariers, no other adults or children. Perhaps at the 2008 conference more Dariers folks will come and we can discuss this disorder. Contact F.I.R.S.T. for more information.
Toni L. (firstname.lastname@example.org) from USA, left at 1:49:15- July 15, 2006
I am very interested in the theory of the lysine/argentin and herpes. I have herpes simplex and take 500 mg of L-Lysine every morning with my other vitamins. I have not had a serious cold sore in my mouth in years. I believe the L-Lysine controls it well. If one appears, I megadose on the L-Lysine and the outbreak is nowhere near as severe. My 17 year old daughter also has Dariers, but no cold sores associated with herpes simplex. Do you see a difference in the Dariers on the lysine?
Toni Langsfeld () from USA, left at 1:42:54- July 15, 2006
I would like to know what Detente is and how do I get a sample? My 17 year old daughter was diagnosed 9 years ago; currently on Accutane with good results and no side effects. Please tell me how to get a sample of the Detente for the occasional flareups.
Tara Lyons (email@example.com) from UK, left at 19:38:48- July 14, 2006
This is not the sort of message the usually gets posted but we need your help with a research project. So if you are interested in sharing your opinions and getting rewarded for it then all you have to do is go to www.indiefield.net and follow the link to “Register Now”. This will take you to the Indiefield Consumer Directory, and is a way of registering to take part in market research events. Sessions can last anything from five minutes to a few hours and, if you take part, you will receive a gratuity of anything from £1 to £150 depending on the exact nature of the study. Please do take part. Thank you so much, Tara
Samantha (firstname.lastname@example.org) from USA, left at 3:45:42- July 14, 2006
Aaron - it makes sense that your skin is better with the antidepressents. Often times stress causes the DD to flare up. It has a lot to do with the nerves. Thanks for the information on your heart murmur. I am finding that a lot of DD sufferers have heart murmurs or other heart problems. I know that heart murmurs are VERY common, so I have no way of knowing if there is a true connection or not. It could all just be very coincidental. I did read a study recently stating that DD was caused by a problem with chromosome 12. Ironically it deals mainly with the heart and lungs. Chromosome 12 that is. I am considering putting in the time and effort to see if there is any medical institution interested or willing to do a study to check for a connection. Its also odd that you mentioned a possible connection between DD and herpes simplex. I recall hearing as a child that the DD was a form of herpes. It did not come from a medical individual. I recall my uncle asking my mother once. Im not even sure how the conversation came about. Please let me know how your medication trials work out. Thanks again, Samantha
Aaron (email@example.com) from America, left at 22:19:26- July 11, 2006
Hi Samantha, I have an innocent heart murmur but I do not know if it is related to my Dariers. It never caused me any trouble. However my physician said I will need an annual EKG for it once I reach 40. For everyone else I found some interesting information that seems to point to Dariers actually being a Herpes Simplex variant. Both disorders get worse in the hot weather and are triggered by things like chocolate for some. Dariers is caused genetically by a substitution in our DNA of arginine for lysine, and lysine lowers the levels of arginine, which the Herpes virus uses to mutate. I am testing out my theory by taking 500 mg of lysine with breakfast and at night. I take 1000 mg total a day. I also found out the toenail fungus that runs in my family and diabetes can both be caused by a biotin or B7 deficiency. I was on a medication for anxiety and my nails got worse while on it and I realized it was because it was lowering my levels of biotin and increasing the susceptibility to it. I now take a biotin supplement every morning. I took Lamisil for 3 months but since I was on a Neurontin, the one that lowered my biotin levels, it might have been negated by it. I also take Loratadine generic Claritin. I take Prozac and Zyprexa for schizoaffective disorder since I have mania, delusions, auditory and visual hallucinations, severe anxiety, and depression. I do not think there is necessarily a correlation between the two but my Dariers is nowhere near as severe since I have been on them.
stevan burwood (firstname.lastname@example.org) from norfolk united kingdom, left at 19:17:58- July 11, 2006
extention to my prior message have just found your site and would find it very helpful to talk to fellow sufferers my desease is very painful at this moment is is covering the whole top of my torso including my face it was diognosed by a biopsy done behind the ear my father and my 2 sisters sufferers from this also but not as badly at the moment I can be reachone my young nieces email as I do not have anemail address of my own yet
Samantha (email@example.com) from USA, left at 20:48:24- July 7, 2006
Hello. Ok, now for the help I need. My daughter Lauran was born May 17, 2006, with a serious heart condition. Some of her doctors are asking if there is any possible connection between the Dariers Disease and Heterotaxy syndrome that Lauran has. To my knowledge there is none. There are a few people in my family with heart conditions, but they arent things that they were born with. So, Im asking for help in the way of information. Is there anyone out there, who suffers from DD who also has a congenital heart defect or disease? Something that they were born with. I posted this question on another message board, and surprisingly I have gotten about 6 responses from people who do have murmurs or prolapsed valves. Their conditions are nowhere as severe as Laurans, but it does make me wonder if there isnt some sort of connection between her heart condition and my Dariers Disease. Thank you in advance for any information that you can provide me with. God bless. Samantha
Samantha (firstname.lastname@example.org) from USA, left at 20:41:40- July 7, 2006
Hello again - for some reason I couldnt get the last message to post the way I wanted it to. So, I will try again. My second comment was for KJ. When you say broken blood vessels, are you referring to spots that look like blood blisters? I get blood blisters on my hands and my feet. My mom, my grandmother and others in my family who suffer from DD also get them. My skin is very sensitive. Even mild amounts of pressure will cause them on my hands. Anything from washing the dishes to scratching an itch. The pressure of my shoes against the tops of my feet will cause they there. Sometimes they hurt, sometimes they itch. Sometimes once they dry out the skin underneath will crack. Unfortunately it seems to be getting worse as I get older. I miss being on the Accutane. It kept my skin gorgeous, but messed with my trigylcerides, so I had to stop taking it. I just had a baby 7 weeks ago, so Im hoping to go back on the Accutane in a few months. That brings me to the help I referred to, but I will put that in another post so this is to terribly long. Take care and best wishes to all. Samantha
Samantha (email@example.com) from USA, left at 20:31:53- July 7, 2006
Hello. My name is Samantha. I am 28 and have suffered with DD for 20 yrs. I used to frequent this page but lost track of it for awhile. Im glad to have located it again. I have a few comments, in response to a couple of other posts, and a request for some help. Ok, here goes. Sharon, when I was on the Accutane, I got a lot of differing information as far as how long I had to be off of it for it to clear my system. The dermatologist who first prescribed it said a year. The next said six months, and then I was told 30 days by another doctor. Its kind of scarey to think about. I do hope that your baby is healthy. Best wishes.
SusanM () from USA, left at 19:11:57- July 7, 2006
To Rachel. I have been using Detente and have had good results on the areas where I applied it. The best results came after about 6-8 weeks. As most of us know. what works for one might not for others. I tried several products from recommendations on this site and have had mixed results.I have used Accutane and Retin-A but both were very drying so I do not like to use them. I have tried to post results from use of Detente but for some reason I kept getting an error after hitting submit. I want to encourage all of you to at least give it a try for six to eight weeks to see if it also works for you. See my post from yesterday to get the contact information for Cinda at Detente. My dermotologist was amazed at the results. Thanks and good luck.
Jenni () from , left at 14:42:44- July 7, 2006
Have you talked to your doctor about being pregnant and got a full ultrasound? When I was on accutaine (the same drug, different name)I was told it would be out of my system in a month and then it would be okay to get pregnant so perhaps things are alright. Wishing you all the best.
SusanM () from USA, left at 19:21:45- July 6, 2006
I have used Detente with great results. Please contact Cinda at firstname.lastname@example.org to ask about it. Also go to the website at www.detentednt.com. Thanks.
Kelly () from , left at 17:31:7- June 28, 2006
Ina--I have troubles with dry eyes as well. My eye doctor prescribed Restasis. It is a drop that I put in 2 times a day. I also use artificial tears inbetween times. The Restasis helps produce more tears. It has helped me.
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