Darier's Disease
What is Darier's Disease?
Darier disease, also known as keratosis follicularis, is a rare genetic disorder of the skin. It is characterized by skin lesions that consist of thickened, scaly bumps which can be yellow or brown in color. Changes affecting the nails and mucous membrane of the mouth may also occur. It is a chronic condition, with skin changes usually beginning in adolescence and continuing throughout the individuals life - flare ups are a common feature.
Darier disease is caused by mutations (changes) in the ATP2A2 gene. It is inherited in an autosomal dominant pattern. This means that only one of the two copies of the gene altered is required to cause the condition. The modified gene can be inherited either from the father or the mother or be a new mutation that occurs sporadically. New mutations happen for no known reason and there is no family history of the disorder. Sporadic mutations of the gene also account for 40-50% of Darier disease diagnosis.
Synonyms
- Darier disease
- Darier-White disease
- Keratosis follicularis
- Dyskeratosis follicularis
- Psorospermose folliculaire vegetante
Darier disease, also known as keratosis follicularis, is a rare genetic disorder of the skin. It is characterized by skin lesions that consist of thickened, scaly bumps which can be yellow or brown in color. Changes affecting the nails and mucous membrane of the mouth may also occur. It is a chronic condition, with skin changes usually beginning in adolescence and continuing throughout the individuals life - flare ups are a common feature.
Darier disease is caused by mutations (changes) in the ATP2A2 gene. It is inherited in an autosomal dominant pattern. This means that only one of the two copies of the gene altered is required to cause the condition. The modified gene can be inherited either from the father or the mother or be a new mutation that occurs sporadically. New mutations happen for no known reason and there is no family history of the disorder. Sporadic mutations of the gene also account for 40-50% of Darier disease diagnosis.
Rareshare would like to acknowledge Dr. Christina Wlodek, Department of Dermatology, Waikato Hospital, New Zealand for reviewing this content.
Prevalence is the proportion of the population that suffer from a condition in a given period of time. The worldwide prevalence of Darier disease is unknown because it is often mistaken for other skin problems. However, it is estimated to range between 1 in 36,000 to 1 in 100,000.
| Name | Abbreviation |
|---|---|
| Darier disease | DD |
| Darier-White disease | DD |
| Keratosis follicularis | DD |
| Dyskeratosis follicularis | DD |
| Psorospermose folliculaire vegetante | DD |
Darier disease is caused by alterations in the ATP2A2 gene. The ATP2A2 gene provides the instructions for building a protein that functions as an ion channel pump called SERCA2. This pump transports calcium ions into the endoplasmic reticulum, a compartment within the cell where protein production takes place. When the ATP2A2 gene is altered, there is not enough calcium for protein manufacturing. Calcium is particularly important for the production of certain proteins called desmosomes, which function as a glue that holds together skin cells thus forming healthy skin. In individuals who suffer from Darier disease there are not enough desmosomes and the normal skin tissue architecture is lost resulting in characteristic skin lesions.
The alteration of only one of the two genes is sufficient to cause the disease. The presence of only one normal functioning ATP2A2 gene is insufficient to produce enough SERCA2 protein to maintain appropriate calcium levels in the endoplasmic reticulum. In fact, some exarcebating factors of the disease (like UV light exposure) have been shown to diminish the protein production from the remaining healthy ATP2A2 gene.
There is another form of the disease called linear or segmental Darier disease in which the lesions are confined to localized areas of skin rather than being widespread. In this case the gene is not altered in all body cells (eg egg/sperm cells are unaffected) therefore offspring will not inherit the defective gene.
It should be kept in mind that not all people with an abnormal ATP2A2 gene will develop symptoms of the disease. This, together with the fact that family members with identical ATP2A2 mutations can differ in the severity of the disease, suggests that other genes or environmental factors may be involved in Darier disease.
The characteristic skin lesions usually appear in adolescence. They consist of greasy, wart-like bumps or growths (papules) that can be skin-colored or brown/orange in color. Lesions usually arise in seborrheic or greasy areas of the body (chest, back, forehead and scalp) and in skin folds that experience friction (groin, around the joints). The lesions can thicken and grow over time eventually coming together forming a larger single lesion. These lesions are prone to secondary infection by bacteria and viruses, which will worsen the condition and may result in a strong odor. The skin lesions can be associated with itching and pain.
Nails are also commonly affected in individuals with Darier disease. They can be fragile with V-shaped nicks at the end. Also red and white lines can appear down the length of the nail. Sometimes the mucous membranes of the mouth and nose as well as the respiratory passages may develop bumps. The area most often affected is the roof of the mouth or palate, but other areas of the mouth such as the gums, larynx or salivary glands can also be affected. There are reports of Darier disease affecting the esophagous (food pipe), anus and rectum.
There are a number of trigger factors recognised as worsening the symptoms and resulting in flare ups of the disease. These include high temperatures and humidity, exposure to UV light, excessive sweating, mechanical irritation, stress, pregnancy and delivery. Darier disease flare-ups therefore tend to be more common in the summer months.
In some instances, Darier disease can also present with other symptoms including psychiatric ones and learning disabilities, bipolar disease or seizures.
If a patient presents with skin lesions suspicious of Darier disease, a skin biopsy can be performed. This involves taking a small simple of skin, which is then examined under a microscope. It is likely to reveal thickening of the outer layer of skin (keratinization) and the absence of attachment between the skin cells (acantholysis). Genetic analysis of the ATP2A2 gene can confirm the diagnosis.
Skin biopsy and genetic testing for ATP2A2.
At this time, there are no curative treatments available. Therefore, symptoms need to be treated as they arise. Steroid ointments or creams are often used to reduce inflammation within the skin lesions. Retinoids applied locally can also help reduce skin thickening. When the lesions worsen and become more severe, an oral retinoid treatment can be prescribed. Oral retinoids have many side effects.
Anti-microbials can be used in patients with secondary bacterial or viral infections.
If lesions fail to respond to conventional treatments and continue growing, surgical removal using lasers is sometimes performed.
It is important for patients to understand this is a chronic condition and needs to be managed as such. They should be advised to avoid exacerbating factors as much as possible.
The severity of the disease can change over time with intermittent flare ups and in the majority of patients their general health remains good.
Kwok PW, Millsop JW, Bhutani T, Liao W. Keratosis Follicularis (Darier Disease)
Emedicine Journal website. http://emedicine.medscape.com/article/1107340
Updated July 11, 2017.
Keratosis Follicularis. National Organization for Rare Disorders website.
https://rarediseases.org/rare-diseases/keratosis- follicularis Updated 2015.
Darier disease. Genetics Home Reference website
https://ghr.nlm.nih.gov/condition/darier-disease Updated March 2008
Takagi, A., et al. (2016). "Darier disease." J Dermatol 43(3): 275-279.
Schoch, J. J., et al. (2016). "Successful Treatment of Keratosis Pilaris Rubra with Pulsed Dye Laser." Pediatr Dermatol 33(4): 443-446.
Last updated 21 Nov 2020, 09:55 PM
21 Nov 2020, 09:55 PM
Hello, everyone. I've been dealing with DD for 40 years and it's fluctuated with hormonal changes. I've been on Accutane for 34 years with no serious side effects along with a plethora of topical ointments. I battle MRSA but we invested in a hot tub 4 years ago and the Bromine has been a God send. I went for 6 years of MRSA outbreaks every 2 weeks to 2 per year that were so mild, it was no biggie. Bromine is less harsh on the skin than chlorine or bleach baths. As far as food triggers, not really any to speak of but the DD flares badly around my period. I use Aquaphor for the scaling and Curel lotion for itching and I wash with Cetaphil and Hibiclens. I recommend ACV for immune system boosts. I have a moderate-severe case. A lot of ways of treating are trial and error. I am highly allergic to any fragrance so make sure you're using perfume free laundry detergents and ointments. Steer clear of wool. Topical Gentamycin gel helps soothe when MRSA is around as well as Mupirocin. It's hard to tell when MRSA is sneaking in as it camoflauges in the DD rather than the tell tale boils that are the common symptom. I can usually tell a MRSA infection may be coming on when I get a small pimple in my eyebrows so I don't use eyebrow pencil to put make up on. I use a q-tip.
I only use my clean hands to apply foundation. I put mascara in a tiny drop of peroxide after each use than rinse well before applying again. This seems to help. As far as blush, I don't use it often but I also disinfect it with peroxide. Hope this helps!
Last updated 26 Oct 2015, 07:06 PM
26 Oct 2015, 07:06 PM
Thanks for your replies. I did find a pretty active facebook group called "Darier's - Let's know each other" Here's a link: https://www.facebook.com/groups/52449648019/ I wasn't planning on taking mega doses of vitamins, just reasonable amounts. That was interesting info about the CPAP and calcium you're on. I'll look into it. Also for some people it sounds like pine bark extract has been good, so I'll be checking into that some more. Good luck on your treatments!
25 Oct 2015, 02:25 PM
First I am sorry you have this disease and I have to agree with beetle on the large vitamin dosage thing. They can be harmful to you. Large doses of vitamin A can cause liver cancer. With that said, "I have linear Darier's disease that I have been treating pretty effectively with out Accutane or Soriatane. Although I was once on Accutane. So my understanding is Linear Darier's disease is that it is the same as Darier's disease it is just for what ever reason contained to the left side of my back and abdomen. So my treatment is done with vitamins and I stumbled upon it. Every doctor I talk to says it should not work but it does. I want to share it but I also want to hear if it works for anyone else. I would be so happy if it did work for others. At 35 years old, my condition was spread to the entirety of the left side of my back and abdomen. I quit working out and did everything I could to cool myself down and it did not work and the condition kept spreading. I did get diagnosed by a dermatologist and I did use Accutane. It was not fun. As you may or may not know Darier's disease is caused by the inability of the skin cells to absorb or process calcium. I started taking calcium. Calcuim Carbonate (Citrate is not so effective) 600 mg three times a day at first and now two times a day. These pills can be bought at any store like Walmart and they are like $10 for 250 pills. For me the Calcium pills have sent the condition into regression although there are two origination spots that will never completely heal. The other vitamin I added much later and it has a minor effect is Turmeric Curcumin. This also can be bought at Walmart. It reduces inflammation in those origination spots. First understand that when taking the calcium your healing if it is anything like mine is going to be very slow. It took over a year for the condition to clear from the infected parts of my skin. You may have increased speed of healing if you take both the Calcium and the Turmeric Curcumin at the same time. I did not know about Turmeric Curcumin till three years later. The first sign it is working will be that the itching and the feeling like your skin is crawling or the condition is spreading will disappear. After that your skin will not be as bright of a red and will appear a darker red if you will. If this works and I so hope it does, your body will begin healing itself and you can ditch the Accutane or Soriatane. Please keep me informed I would love to hear about your progress.
25 Oct 2015, 01:50 AM
I don't think this forum is very active. Rareshare alerted my email account that there was activity today because of your posting. I have never seen that before, if I have, it has been so long ago that I have forgotten. So that is why I'm here (the email alert.). This may be my first posting, so I hope it may be helpful to you. First, large doses of vitamins can be harmful. Some types dramatically more so than others. Too much vitamin A can cause some of the symptoms you are trying to get rid of. Causality has not been established, but at least one study has shown that people who take multivitamins have shorter lifespans than those who do not. Second, if your physician recommended bathing in diluted bleach or vinegar and that works for you, then stay the course. However, there is growing evidence and an increase in research that too much hygiene may be a bad thing for your immune system and can be a contributor to eczema. Getting the right kind of dirty may very well be beneficial. Just like the situation with vitamins, life is all about balances. Third, I have a coworker who does not have Darier's, but was having trouble with something not healing up. His doctor recommended that he get checked for sleep apnea. He was diagnosed and prescribed a CPAP machine. He was not getting enough rest for his body to heal. I followed in his footsteps and now that I am on a CPAP, I have far less flair-ups from Darier's. Hope that helps.
Last updated 7 Oct 2013, 10:42 PM
7 Oct 2013, 10:41 PM
My dermatologist was also at a complete loss to help. It was not until I started taking these vitamins that my condition started to clear and my dermatologist is just completely dumbfounded that this worked. I would very much love to be kept updated to your son's condition to know how the condition responds to the vitamins. I want to know if it is just my body that this works on or if another person will respond the same way I did. In the mean time I will pray for him. Please keep me updated.
7 Oct 2013, 08:21 PM
Thank you we will try this. We will start out a 3 a day and decrease over time. His is getting worse and the dermatologist doesn't have any great suggestions. The ocean used to help, but it doesn't seem to be working either.
7 Oct 2013, 08:00 PM
I want to say the dosage is 675 mg. I don't have the bottle here with me. I would like to hear if this works for others. I believe the vitamins are Nature Valley and I buy them from Walmart of all places. Yellow lable with a green bottle. I think they are $16.00 for a 250 count bottle. Like I said this takes time. The first sign I had that this was working is no longer feeling the tingling like my skin was crawling. The codition at that time was no longer spreading. (1 week) The next sign was the redness was gone from the infected areas. (3 weeks) The third sign was some size reduction of the blemish patches. (6 weeks). Then over the next 6 - 8 months the condition should be near complete remission.
Last updated 6 Oct 2013, 11:55 PM
6 Oct 2013, 11:55 PM
Hi, im interested in if u ever tried the thc salve. if so how did it work for you? im severely broken out now and cant figure out how to control it. im on 30mg soriatane a day and take bleach baths 3 times a week. i moisturize with Aquaphor when its real dry and cetaphil when im not as bad. I wash with dove soap and use T-gel shampoo/conditioner
10 Oct 2012, 04:08 AM
Has anyone experimented with a concentrated THC salve? I have read that the THC and CBD interaction with the endocannabinoid system work to reduce inflammation in many diseases and topical application could help Darier's. As cannabis is (obviously) not researched enough, most evidence is pseudoscience and/or anecdotal. The plant is still illegal in my state, so this would be a risky and rather expensive experiment. I'm going on a raw veggie, fruit, & nut diet tomorrow to see how much it reduces inflammation. Any others tried this? Like a few others have said, mine has been getting worse as I age. I'm 21 now, diagnosed 12 years ago and currently in the worst flare-up so far. Currently I take: * 25mg Soriatane Mon/Wed/Fri * 5,000 IU Vit D * 10mg Hydroxyzine (for itching) * 1,000mg Cinnamon * Z-Bec (Zinc, Vit B, E, & C) * Fish Oil * Custom topical compounds with Sodium Sulfacetamide and Hydrocortisone * Bath every night w/ Robathol Oil, Baking Soda, Urea, & Sea Salt Also looking into Souleiman's recommended new laser treatment, looks to be a carbon dioxide laser. Hopefully it turns out to be a promising solution for us! Any ideas or suggestions are much appreciated. I think I speak for many when I say I'm willing to try anything at this point!
Last updated 14 Oct 2012, 02:15 PM
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.
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….
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!!!
Last updated 13 Oct 2012, 02:43 PM
13 Oct 2012, 02:43 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....
1 Oct 2012, 05:56 PM
Hi, I was 17 when two patches of what I now know as Darier's disease surfaced. One on lower left back and the other just under my chest bone. Besides a few flare ups here and there the condition remained under control until I was 35. Then it just went crazy. I had patches of skin on my lower left abdomen as large as my palm and same on my back that were bumpy and densely populated with the red bumps. It hurt, it itched and I could not stay cool enough even in a Wisconsin winter to stop this from spreading. It was at this time I was diagnosed with Linear Darier's Disease. I also started taking over the counter calcium\vitamin D supplements 3 times a day. With in one month it was clear to me that this was working. No longer did my skin feel like it was crawling and some of infected areas seemed to appear as if they were shrinking. It took over a year for 99% of the rash to disappear but the rash is gone and only comes back when I neglect to take enough calcium\vitamin D supplements (two a day). The hardest\longest areas to heal were those where I had a layer of fat under the skin. I buy these supplements at Walmart. They come in a green bottle with a yellow label. I think they are called Nature Valley but I can't be sure. I also can not be sure that these results will work for everyone but I would love to hear if the supplements do or don't work for anyone else. I know everything I read about Darier's Disease say that taking additional calcium supplements won't work because the problem has to do with the calcium pumps in the skin cells being damaged. I am 37 now, I have very minor signs of condition, I get an occasional bump on my abdomen (One every two or three inches). Also I do have discoloration under the skin where the condition flared up during my outbreaks but the condition has been contained with no side effects. I pray this works for all of you or even it is just some one else. P.S. I am not a doctor I am just documenting my experience. It is my hope your experience is the same as my own. You should consult a doctor before taking the supplements. I did not experience any side effects to date but I can not be held accountable for any side effects that may occur by taking these supplements. If you do decide to follow my advice you do so of your own accord and risk. Also remember the healing process is slow so don't be disappointed at first if it doesn't seem like it is working.
10 Dec 2011, 04:34 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!!!
Last updated 24 Apr 2012, 07:46 AM
24 Apr 2012, 07:46 AM
I used Accutane about 20 years ago and while it did clear up my skin I suffered almost all of the potential side effects. I had yellowing of the skin, thinning of the hair, joint pain, and I suffered horrible nose bleeds as well. The other thing is that I am not able to be a blood donor now. In Canada it doesn't matter how long ago you took the drug, they put you on the do not donate list forever. That is a bit scary to me.
10 Dec 2011, 04:33 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!!!
31 Jul 2011, 02:59 PM
I am on Accutane, called Roaccutane in England, and the results are fantastic, but my oh my do I know about it when I'm not taking it. I'm only on 20mg a day. I'm 26 and want to start a family really soon, and this means coming off Roaccutane. I'm hoping that perhaps people on here could recommend a safe alternative to looking after my skin whilst I'm (hopefully!) pregnant?
Last updated 10 Dec 2011, 04:35 PM
10 Dec 2011, 04:35 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!!!
Last updated 10 Dec 2011, 04:34 PM
10 Dec 2011, 04:34 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!!!
10 Apr 2009, 05:37 AM
I'm new to this forum. My adopted daughter has Darier's disease. I've read all of your entries about vitamins, especially vitamin C. We have found that certain foods make the Darier's worse. She cannot eat citric or tomatoes. These really set her off. She has gone to at least 1 dermatologists with no good results. For a good while we watched her food and doctored her like one would treat acne. This worked for a while until she started itching last year. Her primary care doctor tried Doxepin. It worked well stopping her itching but caused her to gain weight and made her drowsy. Another doctor she has said that it may cause depression if she takes too much of it. Her doctor also had Doxepin compounded with a cream. It worked pretty well also in relation with the oral medication. Her doctor has started her on something else right now though to see if it would be safer. I will tell my doctor some of the things you recommended.
23 Feb 2009, 07:12 PM
Hi Concerned Mom, Thank you for your supportive words. Excersise does seem to make a difference for me as well, mostly becasue I think it helps me manage stress, which is a sure trigger for my Darier's. In regards to immune issues; Yes, I have always been susceptible to random illnesses. A few years ago I had a rash that my Derm. diagnosed as Pityriasis Rosea wich is viral. Normally once you've had it, it shouldn't reoccur, but i've had it 5 times now and it can make you feel quite tired, not to mention it looks pretty bad. There are different things here and there, that it seems like someone with a stronger immune system wouldn't catch. I just try to get lots of rest and drink LOTS of water. I used to get pretty bummed out about my Darier's and the complications that come with it, but I just try to remember that it could always be worse. Best of luck to your daughter in finding a treatment that works for her. I'm on a personal mission to improve my quality of life, so I will be sure to post anything new that I find that helps. Thanks again, Jenny
Last updated 10 Dec 2011, 04:33 PM
10 Dec 2011, 04:33 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!!!
12 Jan 2011, 10:49 PM
yes i have everytime i go on holiday i try to spend as long time as possible n the sea. the sea helps me quite alot, it gets rid of all the scabs and dry bits fall off. it leaves my skin all smooth for a few days and then it all comes back. im happy with the treatments im doing now read my thread i wrote. good luck.
12 Jan 2011, 05:02 PM
Hi! Just joined, but have had dd for over 20 years. Mine is all on the right side mostly on my front trunk and groin, but travels around and up my back when in full blown breakout as now. One thing I found helps me a bit is Ocean Water, I just kept noticing every time I would go in, it would clear. So now when I hit the ocean, I fill up a few coke bottles full of it and use it at the end of my shower to let dry on its own. I have tried sea salt and just plain salt water and they did nothing. Jeans seem to exacerbate the problem as does stress. At least all of this is true for me...Has anyone else tried ocean water?
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Born with Spina Bifida and Hydrocephalus; shunted
Diagnosed with Syringomyelia in 1993; syrinx shunted in 1999
Diagnosed February 14, 2022 with Dariars disease
I live in london UK and i am a Dariers Disease sufferer.
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