Hi, I thought it would be good for people that have Anetoderma to have a way to connect with each other. There's not a lot on information on the internet and I would love to hear from other people what treatment they may have tried, and if anyone was successful.
Thanks!
Subscribe to:
Post Comments (Atom)
.jpg)
39 comments:
Maybe u should move to live in place with different climate.
http://health4allcheck.blogspot.com.
Why would a different climate make a difference?
Hy!! I´m a spanish girl with anetoderma too. I would like to sharemy experiences with you...please contact me!!
ainarangunea@hotmail.com
Sorry for my english!
my son has anetoderma it stared at 5years old he is now 12years, it has been hard to deal with, it is on his neck, chest, arms and back. The doctor said when my son turns 18 he could get plastic surgery, so that was good news, have you been to any plastic surgeons?
I was diagnosed with anetoderma at about the age of 12, around 1987. It had been there for as long as I remember, but it was attributed to chicken pox scars. Until it started to spread. I was referred to Mayo Clinic and they diagnosed me. I too get the smart*(# comment about being attacked by mosquitos. I guess the people where I live are about as original as the people in your community. I got tired of the explanation about scars and a skin disorder, so I thought I would appeal to their sarcastic nature. Once in awhile I will answer with "no, my mom used to burn me with cigarettes." You should see the looks of horror and embarrassment - and the apapologies for the rudeness - I get. I do tell them I'm joking and that it is a skin disorder.... eventually. Now don't get me wrong, I find absolutely nothing funny about child abuse and I have a very loving mother, but I think people should be aware of how asking something so rudely can be hurtful - no matter what the causse of the blemish.
I recently had a positive ANA test, and am I wondering if anybody else with Anetoderma has ever gotten this abnormal lab result. I noted an article on emedicine which states that there has been some association discovered between primary anetoderma "to include the following:
o Autoimmune -Lupus erythematosus, antiphospholipid antibody syndrome, Addison disease, hypothyroidism, Sjögren syndrome." Has anyone else ever seen evidence to support these claims?
Thanks for reading my comments. Waiting to hear back...
I am a 28 year old girl from Sweden who first got anatoderma for about 10 years ago. It started on my shoulders and upper arms but has now spread to the entire abdomen and the back (I look like a freak....).
I have visited two dermatologists and have had a biopsy done, and blood samples taken to examine whether it was due to borelia. I did however not get any answers to my questions and the doctors did not know what you can get it from or how to cure it.
I feel rejected and sad because I do not know how to move forward, it feels like no doctor listens or takes me serious.
I've also read that Anatoderma can be a side effect of an underlying disease. Is there anyone who has tested for these diseases that TDOG writes about?
I´m so afraid to get it on the neck or face, is there anyone who has received it there?
It feels like I have got my outbreakes of nasty "scars" after being burned in the sun, is there anybody who has the same expreience?
I´m looking forward to your answeres, please contact me if you want to share more experiences or mabye pictures to compare. I´m feeling so lost..
(Sorry for my english, it´s sooo bad;)
@Rosalyn: In sweden they say that you can´t get rid of the spots because it´s a defomity in the deep layer of the skin..
I am 32 yrs old and just got the diagnosis of anteoderma two weeks ago. i feel so alone and scared and honestly confused because my symptoms do not look the same as the pictures I have been viewing. My symptoms are white pigmented spots that have developed on my arms is there anyone out there who have these symptoms too?
Hi, I don't usually check my blog because there is never much response from people.
At TDog - I haven't been diagnosed with any underlying condition...but I do worry about it a lot, that something is there and it's just undetected. I do think that extreme stress and worry does make the bumps appear more, so I try not to get stressed.
At Looper83 - I gotten one spot on the side of my chin...it's thankfully not that noticeable, and I'm probably the only one that does notice it.
Feel free to contact me by email or friend me on facebook. smharris@accesscomm.ca
Hi!!! I am 30 years old girl (or young woman) and I was diagnosed with anetoderma 2 months ago. Related with possible causes of the disease, I did and I am doing a lot of analyses because I am in pregnant (I don´t know what was first, my pregnancy or this disease) and I needed know my real health condition. Anetoderma can be primary (no related with another disease) or secundary and caused for distinct conditions: autoimmunne diseases like Lupus, antiphospholipid syndrome or associated to autoimmunity against thyroid gland; infections: Borrelia Bugdorferi (Lhyme disease), sifilis, tuberculosis; some pre-existing skin diseases: acne, and other wich I don´t remember. Respect to autoimmune diseases sometimes anetoderma is the first symptom, and years after the disease makes it present.
Almost all the analyses in my case are normal, a exception of the autoimmune antibodies against thyroid gland. This are only a few elevated (were normal 2 months ago).
In relation with the localization of the white spots, I have few in my upper legs, arms and back , two spots in my face (really small, just I can see them), but I am sad because in this moment I have a bigger patch on my chin (it is a early mark, not even white). I am so scary because I am in pregnant and I can´t receive treatment and if in internet there is few information about anetodermia, the information about anetoderma and pregnancy is less :( .
Did you receive any treatment? Could it stop the disease or at least improve the appearance of lesions?
Sorry for this long message and the bad english ( I speak spanish) , but I needed express me. If you want can contact me (issita02@gmail.com).
Hello Everyone!
My name is Becky (33) and I was diagnosed with Anetoderma 25 years ago at the University of Minnesota. It started with only a few spots but now has grown to more than I can count. I've made several trips back to the U of M over the course of 25 years to see if anything new developed. Nothing ever did. This September I will be going to the Mayo Clinic in Rochester for a different perspective. Most times, I know more than the doctors so I don't expect to learn anything new or hear that something can be done. Nonetheless I figure its worth a try :) Although it can be hard I've learned to love myself for who I am. I DO understand the difficulty and would love to chat with any of you.
Take Care,
Becky
Hi I'm Michale and I have been diagnosed with Anetoderma 10 years Go. I am really working on supplements to build my Collegen and Elastin up in my skin. I have also recently been using The Rife GB frequency generatory for it with good results. The spots are fading. I am 50yrs. Old and have been getting the spots since my early 20's.
Please write or email if you would like to talk.
mkcflightnurse@gmail.com I'm on facebook too.
Hi I'm Michale and I have been diagnosed with Anetoderma 10 years Go. I am really working on supplements to build my Collegen and Elastin up in my skin. I have also recently been using The Rife GB frequency generatory for it with good results. The spots are fading. I am 50yrs. Old and have been getting the spots since my early 20's.
Please write or email if you would like to talk.
mkcflightnurse@gmail.com I'm on facebook too.
Hi Becky,
I love to hear from you (on stephanierosvall@hotmail.com) in september if the doctors have come up with a solution. In Sweden there is unfortunately no treatment for the condition (yet!)..
Thanks,
Stephanie
Hi Looper83: this is in response to your comment about anetoderma caused by the sun. I noticed that mine is mostly triggered by two factors: sun and heat. Naturally I am quite pale, and I can only develop a light suntan, usually with some redness /allergic reaction first. I got anetoderma when I was about 25. Now, when exposed to sun, first I get an allergic reaction - my skin is red and uneven/ bumpy, then the bumps loose the collagen, and I end up with anetoderma spots. It happens very quickly, maybe within two hours. The only thing I came up with is to avoid the sun, and wear long sleeves or SPF 50. Some doctor told me it has something to do with inflamation, so when I know I've been exposed to sun I try to follow up with a pain killer. I'm not sure how much it helps though. The other thing I try to do is to avoid very hot showers, 'cause I suspect they are also triggering it. Good luck to all the sufferers, D
@Diana:
Hi Diana, Your decription sounds just like what I have experienced, which is good to hear because the doctors in Sweden denied that exposure to the sun could lead to anetoderma. Please contact me (stephanierosvall@hotmail.com) if you hear any news on how to remove / avoid scars. Thanks in advance!
Hi there,
I am a Swedish guy with Anetoderma. I was diagnosed about seven years ago. My dermatological specialist doctor was, frankly, amazed with the finding. I guess I was his first patient with Anetoderma and the doctor was about 55 years old. I have affected tissue mainly on my legs, more concentrated on the feet and knees. I have read the list possible causes and the only things that applies to me are either Hepatit B vaccination (Gammaglobulin) or insect bites.
Does anyone know the frequency of our disease? It seems to be very rare and the research for treatment and causes thus limited...
@ all-in på livet: vilka sjukhus/läkare har du gått till i Sverige? Vilka tester har du fått gå igenom? Maila gärna mig på Stephanierosvall@hotmail.com så kan vi utbyta erfarenheter!
Hi everyone, nice to see more people on here. I always feel so alone with these bumps...(just me and my bumps)
PS... I don't avoid the sun at all, haven't found that it's affected my spots at all. I've found that extremely stressful times in my life are what have made more of them appear.
I've created an Anetoderma Support Group on facebook
https://www.facebook.com/groups/150921675046234/#!/groups/150921675046234/...please join!
Hey all,
I'm a 29 year old guy from Brazil and have got my first anetoderma for over a year, first on my abdomen and back, then appeared on my shoulder, upper arms, and one single lesion on my neck, which bothers me the most, but I believe it is not that noticeable. About 8months ago I did the first session of CO2 laser/fraction laser on the abdomem, and on the neck (before the ones on the shoulder and upper arms appear) and then, last january I did the second. the dermathologist made it clear it would be a kind of trial. I saw an cientific article, which I couldn't have access, from a south Korean dermathologist, which the title was "Generalized secondary anetoderma associated with juvenile xanthogranuloma: successful treatment with a pinhole method using CO2 laser", from 2012. But actually after the two sessions, (the dermatologist told me to do at least three) I haven't seen significant changes, perhaps the skin around it looks better, or the lesions became a bit smaller and dicrete, but if it is something that really bothers you, maybe it is worth the trial, the appearance can get better. I will do the third session though and see how it goes.
Sorry for my English!
Yes Diego, please keep us informed! I was trying to read more about this treatment on the Internet but all the articles you have to purchase. I hope it works!
Please join our Facebook group, the link is above.
Hi, im mary and I have my anetoderma on my arms, neck and more on my face. It's really depressing specially when the doctor says that theres no cure for this. The patches i have on my face is not that obvious but they start to increse like within a month i got 3 and it starts to worries me. I am from philippines and none of my family have this except me.
Hi, my 13 year old sister was diagnosed with Anetoderma yesterday. She has lived with this since she was about 9 (about 4 or more years). It first started on her lower abdomen with several "bumps" and one grew very large. They eventually went down and she grew more in her inner arms (near arm pit) and then in her inner thighs. It's interesting to me how these are all dark, warm places. I wonder if it would worsen or improve if she aired out these areas and put some sunlight on it. She has really had a very hard time living with this condition and it has been somewhat traumatizing for her. She is very embarrassed to show these areas. I feel so bad. Summertime is very hard for her since she doesn't like to show her "bumps" with tank tops, swim suits, etc. Her doctor and dermatologist all say to "wait" and "it will go away". The dermatologist mentioned getting a filler injection but didn't promise any outcome. The dermatologist also said removing the lesions will leave a scar and doesn't fix the problem. Thank you for this blog and facebook support group. I've learned a lot here! Best wishes.
I forgot to mention we live in the US (California).
Hi, I have a rare skin disorder called Anetoderma. I'll tell you my story....I was about 13 years old and in the 7th grade when it all started. I have it mostly on my inner thighs and a little bit on my lower legs. When I was in the 6th grade I got a wart..or what I thought was a wart on the inside of my left leg. I didn't wear shorts because I was embarrassed by the sight of it. Nobody in my family knew that I had this on my leg and I didn't want to ask my mom to buy that wart remover stuff, I was hoping it would go away on its own. Then a few weeks later three more showed up around my "wart". I thought they were warts at first but I knew that they couldn't be. They looked like pimples on my leg that were hard and very sore. As the days went by more and more were showing up and eventually started on my other leg. But only on the inner thighs, and a few showed up on the lower parts of my legs. It got so bad that they were popping up next to eachother and my whole inner thighs were covered by them. I didn't know what was going on, I wanted it all to go away. I didn't tell my mom, nobody knew a thing. And I understand that probally wasn't the best idea, but I was 13 years old and figured it would just go away. For the next year I went through alot of pain. My pants would rub against them when I walked and sometimes it would feel like my legs were bleeding! I seriously would run to the bathroom cuz I could feel the blood trickling down my leg..but there was never any blood. By the time I was in the 8th grade the pimples started to go away and I was so happy...but as my skin started to smooth out a little from the red bumps, it started to sink in making a scar where each red bump was. So when all the bumps were gone I was left with horrible scars all over on my inner thighs and the spots down on my legs. I learned to know that I was going to be scarred for the rest of my life and I would have to deal with it. But I tried my hardest to keep it from everyone. But my mom saw a glimpse of my legs when I was getting dressed one day for school and asked me what was on my leg...I only showed her the few that were on the lower part, the worse of it all was up higher. She was really worried and made me a doctor apt asap.My doctor had me lay on the table and spread my legs open, very uncomfortable for me, and that was my mom's very first time actually seeing the problem I had, she was in shock. The doctor spent alot of time looking at my scars and had no clue what it was. He sent me to a dermatologist who knew right off the bat what it was. He went and got a book that only had a small paragraph on Anetoderma. he told me that it was one of the rarest skin disorders and the patient usually knows more than the doctor. But he usually see's it show up on the arms and back. He told me there was nothing he could do but was sure that it only goes through one process soI wouldn't have to worry about any more showing up. I'm 30 years old now and haven't had any more breakouts, but I still live with the scars.I am no longer self conscious about my scars and I wear shorts now. I've always wondered about anetoderma and have looked it up online in the past, but never really found too much on it.I've looked at pictures, but haven't seen anything like mine, but then again they all look different. My whole inner thighs are nothing but a bunch of circle scars, most of course are connected so its pretty much one big scar that looks and feels very strange. One thing that I wonder about is if my body could handle a pregnancy? I know that Anetoderma is caused by lack of elasticity, so I'm not sure how my skin will react to it stretching for a baby to grow inside. I know I would get the worse stretch marks in the world, but how far out can my skin handle it with not having the greatest elasticity? Anyways I found this web site and thought I would share my story and see if anyone out there knows anything more about this rare skin disorder of mine.
Have any of you tried taking citric fruits out of your diet? Like oranges, lemons,limes? Let me know if it helps?
Have any of you tried taking citric fruits out of your diet? Like oranges, lemons,limes? Let me know if it helps?
Hi , I'm sick. I have the same problem as macular degeneration and I'm still looking for a cure
Hi Michael , I'm sick. I have the same problem as macular degeneration and I'm still looking for a cure
Hello I started my problem in the third decade of old bloated pills caused by itchy and uncomfortable appearance, which made me chose my clothes so as not to raise the eyes of others towards I have seen pictures of macular degeneration of the skin and I want to add pictures of my condition as I hope to know the cure for this disease I feel that the age is over and I wait I want to see the light
Hi there. Just wondering how people act around you when they catch a glimpse of it?? I get bad reactions. People make me feel like I’m some hideous creature so my social life has diminished dramatically. I don’t feel like myself. I feel like a recluse shut in. I can’t take my shirt of around anyone cause I hate that they make a face then talk about me behind my back then they either fade away from my life or they stick around and point it out to just about everyone that comes near me. I don’t know what to do.
Hi everyone! I’m new to this whole thing. I'm 16 and I found my first anetoderma “spot” about three or four years ago and back then I thought nothing of it until I spoke with my parents about it. We looked up a doctor and he said it was anetoderma and theres nothing we can do about it. He said they wouldn't continue to spread. Back then I had 5 - 10 at most. They were on my upper back and on my shoulders. Now I have on my neck, my throat, my legs, my collarbones and my back. So we contacted a skin clinic, I took a skintest and now I’m waiting for my results; if I have anetoderma or something else weird. While I wait I’ve looked up ways to remove them but I haven't found anything. I don’t care anymore if I get scars, because I’m really sick of this - I feel like a nice cactus. But I’ve read that you can’t remove them if they’re too close to each other, is that true? Because mine are like millimeters away from each other.
Join the “Anetoderma Support Group” on Facebook for more info. https://www.facebook.com/groups/150921675046234/
In 2012 I noticed I had a slight "rash" on my sides and torso, quickly the little red spots turned into larger red spots and spread from my back and torso up to my face, neck, and head, which then led me to have small patches of my hair fall out. It looked as though someone took a cigar and burned me repeatedly. After a few months the spots on my face and head slowly went away and my hair grew back.. after a year or so it appeared as though the lesions had shifted and grouped together, so now I have less spots on my skin, but they are larger in size. They also turned into a lighter flesh color, they are no longer red. It has taken a toll on my self esteem and has changed my life forever. I haven't been to a beach since 2012. I haven't been in a relationship since then either. I used to do some gigs as a model and would work out on my body, but when I'd be out at a bar or at a festival, drunk people would try and be funny and pull my shirt off and cheer me on to provoke a striptease of some sort. Because of that, I stopped working out as to not bring any attention to myself. I'd say this condition has ruined the quality of my life altogether.
Post a Comment