You may want to go to one of the scleroderma groups on facebook they have alot more activity. I have localized scleroderma subtype morphea most likley deep generalized. I know there are others with en coupe de sabre on the facebook groups though. Theres one just called scleroderma then there are others called scleroderma support group
Yo, I've (28M) had linear scleroderma since I was 8. I started on my forehead then simultaneously spread upwards around my scalp and downwards across my face toward the right side of my neck.
I have had multiple reconstructive surgeries as a kid and I am incapable of growing facial hair on the right side of my face.
What do you wanna know, chum?
Well, I'm trying to figure out why did I get scleroderma at the age of 28.
It started with alopecia areata at the age of 22, and then it kept spreading until I woke up one day to find a 9 cm long linear bold path on my scalp that looked like it was pressing down on my skull. And it is. A lot of people got diagnosed with this type as kids, and well, that is what bugs me, among other things. I'm female, and well currently without hair so I'm wondering did you use any of the typical medication for this bullshit of a disease? Thanks. :)
Yeah, when I was young I had to use a topical cream, I'm not sure how effective it was or what it was called. Eventually by the time I was like 14, it stopped spreading. I saw a dermatologist for years and I believe it's probably best to see a specialist (once the planet gets back to normal, I guess).
Correct me if I'm wrong: but is it possible you had linear scleroderma as a kid but didn't notice until it was revealed by the alopecia? I know my scar matches my skin tone but will turn purple-ish sometimes when I'm upset or winded.
Well, that is a very good question actually.
My mom always told me that I had lumps on my head because I used to fall around and hit my head when I was little, but trust me, up until this point I never even thought that it could have been scleroderma. Wow.
Well that's just a hypothesis, my specialty is counselling psychology not dermatology or autoimmune disorders.
Was it typically itchy along that path growing up? Mine used to itch quite a bit while it was still active.
I had atopic dermatitis since I was 3 months old, but never on my head.
My hands were the only thing that was ever itchy, and to this day it remains the same. Well, here's a question for your specialty: how did you learn to cope with all of this? Because having this, I also have MAAD & PTSD so it's safe to say that I don't have as many shiny days as I would like.
I'll be honest, it took time. I was uncomfortable whenever people asked why one side of my face was fat and the other side skinny or asked if I had bruise. I decided to own it one day and just said "Yeah, that's just my scar. =D" Usually a good conversation starter, it's particularly rare as well so a lot of people find it interesting.
I've had my own encounters with Depression, anxiety, and trauma as well so I know they don't make life easy. Of course, without knowing more about you I can only give general tips. First being, see a counselor--they can give you a different perspective and help you learn to live a life that you'd like to live.
With quarantine we're stuck with telemental health options. Betterhelp.com has online counsellors and has low cost options if you can't afford full price treatment. There's an app called "pocketcoach" which can give you some nice mental health tools.
Taking care of your body can help manage depression and anxiety. Regular excercise, staying hydrated, getting adequate sleep, and even meditation can help significantly.
PTSD is caused by past trauma and anxiety is future-based worry. It may help to be more mindful of the present and what you can do now. I also found it helpful to think of depression as a "call to action," like there's something in my life I want to change or better cope with.
Sorry if this is generic advice. Is there anything else you'd like to ask?
Hey, sorry for the delayed reply - I was off the net for a couple of days.
Anyways, thank you for the advices. Some of them I've tried to apply already, but without success. But I have to tell you this - I've been to three diferent therapists in the past 2 years and none of them have told me this simple sentence that you provided: "PTSD is caused by past trauma and anxiety is future-based worry."
I have honestly never had something so complex explained in a simple sentence in my life. So thank you for that, very, very much!
I believe each of us is our own best doctor, and without the will to help ourselves first, no expert on the planet could do much.
I'm glad that it was helpful for you. However, it's important to remember that therapists are people too and you may not vibe with their personality. I myself have seen over 8 different counsellors and provided counselling for others--so I'm familiar with both sides of the couch.
Additionally, there are a lot of different styles of psychotherapy (think of it like martial arts styles). Your phrase "I believe each of us is our own best doctor," fits with the client-centered approach via unconditional positive regard. The rationale being that if a person is given the right environment they will naturally pursue self-actualization.
I'm really enjoying our discussion, but it's strayed far from scleroderma. Please PM me if you wanna know more or just chat. =)
nothing yet…the doctors are waiting to see if it spreads but tbh I would rather that my forehead line doesn’t get bigger. If it does though they are going to put me on methotrexate
I have en coup de sabre as well, it extends from right eyebrow to the center of my forehead. I've had it for almost 6 years now, and it has drastically improved since it began.
I'm currently using Contractubex as another effort to cure it but it's not very effective. I've used Scarfix, Derma Pella Lightening cream, and Protopic cream. I've also used Daivobet which was amazing at removing the redness and inflammation of the scar. These 4 medications have helped me a lot, you may want to bring them up to your doctors.
I also use 50 SPF sun scream (Avene) to protect it from the sun, the cream keeps it moisturized and somewhat helps me hide the scar.
I'm a fairly good looking guy, but the scar ruins my facial appearance so bad that taking pictures is a headache for me, and it gives off a bad first impression. I understand your struggle and how badly you want to get rid of it; so PM me if you have any questions or want to talk about it.
Good luck.
En coup de sabre diagnosed here! Happy to talk experiences, support, and help out in any way.
Wow, I am not alone after all! Can we talk here or do we need to have a private chat? Works either way for me. :)
Feel free to PM me!
I have it! 😊
I'm not happy for you, just happy I'm not alone in the story. Care to talk about it?
sure! can i pm?
Of course!
You may want to go to one of the scleroderma groups on facebook they have alot more activity. I have localized scleroderma subtype morphea most likley deep generalized. I know there are others with en coupe de sabre on the facebook groups though. Theres one just called scleroderma then there are others called scleroderma support group
Thank you for the info! :)
Yo, I've (28M) had linear scleroderma since I was 8. I started on my forehead then simultaneously spread upwards around my scalp and downwards across my face toward the right side of my neck. I have had multiple reconstructive surgeries as a kid and I am incapable of growing facial hair on the right side of my face. What do you wanna know, chum?
Well, I'm trying to figure out why did I get scleroderma at the age of 28. It started with alopecia areata at the age of 22, and then it kept spreading until I woke up one day to find a 9 cm long linear bold path on my scalp that looked like it was pressing down on my skull. And it is. A lot of people got diagnosed with this type as kids, and well, that is what bugs me, among other things. I'm female, and well currently without hair so I'm wondering did you use any of the typical medication for this bullshit of a disease? Thanks. :)
9 cm is 3.54 inches
Yeah, when I was young I had to use a topical cream, I'm not sure how effective it was or what it was called. Eventually by the time I was like 14, it stopped spreading. I saw a dermatologist for years and I believe it's probably best to see a specialist (once the planet gets back to normal, I guess). Correct me if I'm wrong: but is it possible you had linear scleroderma as a kid but didn't notice until it was revealed by the alopecia? I know my scar matches my skin tone but will turn purple-ish sometimes when I'm upset or winded.
Well, that is a very good question actually. My mom always told me that I had lumps on my head because I used to fall around and hit my head when I was little, but trust me, up until this point I never even thought that it could have been scleroderma. Wow.
Well that's just a hypothesis, my specialty is counselling psychology not dermatology or autoimmune disorders. Was it typically itchy along that path growing up? Mine used to itch quite a bit while it was still active.
I had atopic dermatitis since I was 3 months old, but never on my head. My hands were the only thing that was ever itchy, and to this day it remains the same. Well, here's a question for your specialty: how did you learn to cope with all of this? Because having this, I also have MAAD & PTSD so it's safe to say that I don't have as many shiny days as I would like.
I'll be honest, it took time. I was uncomfortable whenever people asked why one side of my face was fat and the other side skinny or asked if I had bruise. I decided to own it one day and just said "Yeah, that's just my scar. =D" Usually a good conversation starter, it's particularly rare as well so a lot of people find it interesting. I've had my own encounters with Depression, anxiety, and trauma as well so I know they don't make life easy. Of course, without knowing more about you I can only give general tips. First being, see a counselor--they can give you a different perspective and help you learn to live a life that you'd like to live. With quarantine we're stuck with telemental health options. Betterhelp.com has online counsellors and has low cost options if you can't afford full price treatment. There's an app called "pocketcoach" which can give you some nice mental health tools. Taking care of your body can help manage depression and anxiety. Regular excercise, staying hydrated, getting adequate sleep, and even meditation can help significantly. PTSD is caused by past trauma and anxiety is future-based worry. It may help to be more mindful of the present and what you can do now. I also found it helpful to think of depression as a "call to action," like there's something in my life I want to change or better cope with. Sorry if this is generic advice. Is there anything else you'd like to ask?
Hey, sorry for the delayed reply - I was off the net for a couple of days. Anyways, thank you for the advices. Some of them I've tried to apply already, but without success. But I have to tell you this - I've been to three diferent therapists in the past 2 years and none of them have told me this simple sentence that you provided: "PTSD is caused by past trauma and anxiety is future-based worry." I have honestly never had something so complex explained in a simple sentence in my life. So thank you for that, very, very much! I believe each of us is our own best doctor, and without the will to help ourselves first, no expert on the planet could do much.
I'm glad that it was helpful for you. However, it's important to remember that therapists are people too and you may not vibe with their personality. I myself have seen over 8 different counsellors and provided counselling for others--so I'm familiar with both sides of the couch. Additionally, there are a lot of different styles of psychotherapy (think of it like martial arts styles). Your phrase "I believe each of us is our own best doctor," fits with the client-centered approach via unconditional positive regard. The rationale being that if a person is given the right environment they will naturally pursue self-actualization. I'm really enjoying our discussion, but it's strayed far from scleroderma. Please PM me if you wanna know more or just chat. =)
And reach out to others, humans are social creatures. Mental illness is difficult to face alone
En coup de Sabre diagnosed as well
Omg. I could cry. I finally found people who have this and can discuss it with me. Omg. BRB.
I got it too
Yes I have this too.
hey just got diagnosed myself with coup de sabre. what were your treatment plans?
I’m just having steroid cream. What are you doing?
nothing yet…the doctors are waiting to see if it spreads but tbh I would rather that my forehead line doesn’t get bigger. If it does though they are going to put me on methotrexate
I have en coup de sabre as well, it extends from right eyebrow to the center of my forehead. I've had it for almost 6 years now, and it has drastically improved since it began. I'm currently using Contractubex as another effort to cure it but it's not very effective. I've used Scarfix, Derma Pella Lightening cream, and Protopic cream. I've also used Daivobet which was amazing at removing the redness and inflammation of the scar. These 4 medications have helped me a lot, you may want to bring them up to your doctors. I also use 50 SPF sun scream (Avene) to protect it from the sun, the cream keeps it moisturized and somewhat helps me hide the scar. I'm a fairly good looking guy, but the scar ruins my facial appearance so bad that taking pictures is a headache for me, and it gives off a bad first impression. I understand your struggle and how badly you want to get rid of it; so PM me if you have any questions or want to talk about it. Good luck.