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Biomarker for Diffuse Scleroderma skin has been discovered!


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31 year old male with en Coup de Sabre, considering fat grafting.


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#1 Ranchosteve

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Posted 02 October 2014 - 09:37 AM

Hello everybody I want to share my story.

 

I have lived with Coup de Sabre since I was 13 years old.  It has affected my life to the day, making me very self conscious with my appearance through out my life. I am currently getting consults with plastic surgeons over getting fat graphs. I will update this post with pictures and progress, if you have any questions, feel free to ask.



#2 Amanda Thorpe

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Posted 02 October 2014 - 03:01 PM

Hello Ranchosteve

 

Welcome to the forums although I am sorry you have had to  live with en coupe de sabre for so long.

 

It would be great to have photos in our gallery of before and after fat grafting and I certainly hope it's a successful procedure for you.

 

Take care and keep posting.


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#3 Joelf

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Posted 03 October 2014 - 02:00 AM

Hi Ranchosteve,

 

Welcome to these forums!

 

I'm sorry to hear that you've suffered with En Coup De Sabre for such a long time and I do hope the fat grafts will be successful.

 

Please do keep posting and let us know how you get on.

 

Kind regards,


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#4 Ranchosteve

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Posted 30 October 2014 - 11:41 AM

Update: photos here

 

I consulted with 3 different surgeons, First one quoted me $5000, second $900, and the third $2000. I didn't base my decision on price, but the Doctor I liked the best was also the most affordable.



#5 Ranchosteve

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Posted 30 October 2014 - 11:42 AM

Thank you for welcoming me, If anyone has questions I will do my best to answer them.



#6 Amanda Thorpe

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Posted 30 October 2014 - 03:08 PM

Hello Ranchosteve

 

I am in the UK but I understand that you guys can rate your doctors? That being the case, what sort of reviews does this doctor have, how many times have they done this procedure on people with scleroderma and how successful was it? Infection rates?

 

The Royal Free London, a scleroderma centre of excellence, does a similar procedure for people with microstomia to give them back a mouth. They take the tissue/fat or whatever it is from a scleroderma free part of the body, check that the fat/tissue really is scleroderma free, then inject it or however they transfer it to the affected body part. The reason they check the tissue/fat to make sure it's free of scleroderma first is to make sure they don't inadvertently inject/transfer scleroderma back into the face.

 

I hope your procedure is successful and remember to have those before and after photos ready for our gallery. If you want to, no pressure, of course!

 

Take care.


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#7 Ranchosteve

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Posted 31 October 2014 - 02:50 AM

Although I am from Los Angeles I had the surgery done in Guatemala, due to be being stationed here for a year because of my job.

 

As for a rating system here, it's non existent. You might see some reviews online but I wouldn't really rely on them.

 

I did post some before and after pictures in the link above to "my album." I am not sure how to post pics in a post.



#8 Joelf

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Posted 31 October 2014 - 06:29 AM

Hi Ranchosteve,

 

Your pictures are great and very helpful and informative. Thanks so much for posting them. :)

 

I've put the link to them in your previous post #4, as per our guidelines we request that our members post their photos in the Photo Gallery, rather than including them on the forums.

 

Kind regards,


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#9 Amanda Thorpe

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Posted 31 October 2014 - 07:00 AM

Apologies Steve, I missed your pictures in the gallery, thinking you were yet to have it done! The difference is amazing, that's what you call before and after. How long did the procedure take and were you in pain/discomfort afterwards?

 

En coup de sabre can be really disfiguring and it is great to have you share your experience of almost completely reversing the damage caused by it. 

 

Take care.


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#10 Ranchosteve

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Posted 31 October 2014 - 09:23 AM

Thanks, the surgery started about 8am, I woke up around 10:30am. Since they put me to sleep, I am not sure how long it took to do the actual process. They extracted from my abdomen, treated it and injected it into my forehead.

The pain after was very mild, my forehead felt sore and slight pressure. They overfill the area by about 40% because the body absorbs fat.

It's still too early to tell how my final results will be, I will know in about 3-6 months. But I am happy with the results so far, it's not 100% but close to about 90% of "normal." I hope it stays how I am now.

For the first time in long time I feel kind of normal.



#11 Ranchosteve

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Posted 31 October 2014 - 09:28 AM

Also I have a dark pigment where the En Coup De Sabre is. The doctor wants to try a laser, although I am skeptical about if it would work. He is going to charge me $100 for the treatment so I am planning on trying it out.



#12 Ranchosteve

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Posted 01 November 2014 - 08:00 AM

New photo added, 8 days after surgery. The bruising has almost gone and swelling has gone down.



#13 Amanda Thorpe

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Posted 03 November 2014 - 04:29 AM

Hello Ranchosteve

 

I thought you would like to know that we have included a link to your photos on our En Coup de Sabre page, under treatments. We have many people come and go with this type of scleroderma and it's great to be able to now provide people with photos of one type of treatment, thanks again, It's only when people share that we are able to do this.

 

Take care.


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#14 Eoinok

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Posted 12 December 2014 - 01:19 AM

Steve, I have a question for you if you don't mind. 

 

Has the indention steadily worsened over time? You mentioned it started at age thirteen. Did it get to a certain level and stabilize, or has it gotten worse continuously? Sorry if this is a rude question, it's just that I seem to be in the beginning stages of en coup de sabre myself and while I know your experience won't predict mine, I want to get details from as many sufferers as possible.



#15 Amanda Thorpe

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Posted 12 December 2014 - 02:34 PM

Welcome Eoinok

 

Sorry that you're at the beginning of en coup de sabre. Are you under the care of a scleroderma expert, we always recommend it especially as en coup de sabre can be so complicated. If you haven't already looked, Ranchosteve has posted photographs of the procedure.

 

I hope this helps and take care.


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#16 Eoinok

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Posted 13 December 2014 - 05:40 PM

Thanks for your message, Amanda.

 

I have not been able to consult with a scleroderma expert because I can't find one in my country of residence. I'm Irish but I live in South Korea. I've been in contact with the Irish Scleroderma and Reynaud's Association but they have not been able to find an expert here. I've arranged to fly home during my next vacation period but until then I think my best bet might be to go back to the dermatologists/rheumatologists at the nearest large hospital armed with as much information as possible and see if I can't get some kind of advice or treatment that way. 

 

It's extremely frustrating because I've actually gone through quite a rigmarole already with several different doctors/hospitals. I'd really like to know what I should be asking for in terms of drugs/treatment, but I'm afraid I'll just be told again that there is no treatment. 



#17 Joelf

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Posted 14 December 2014 - 09:16 AM

Hi Eoinok,

 

Well, it's certainly a good idea to get as much info about your condition and then go armed with it for your consultation with the dermatologists/rheumatologists when you have your appointment.

 

You could also print off our medical pages on the treatments for En Coup de Sabre and also our information on Phototherapy, UVA, PUVA  which is now considered to be the first line treatment for Localised Scleroderma.

 

Kind regards,


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#18 Amanda Thorpe

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Posted 14 December 2014 - 02:19 PM

Eoinoc there is no cure but there are treatments and that's why it will hopefully be worth all the palaver of finding an expert.

Take care and keep posting.
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