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vivi_vvv

17 years with linear morphea

8 posts in this topic

Hi,

 

At the age of 8 I was diagnosed with linear morphea. It have it on my abdomen area and my back. I can't remember how it started, all I remember is waking up one morning and seeing my right side of my abdomen and back filled with dark spots. For quite sometime the morphea was inactive but this year it has become active and has spread quickly around my chest and arm. I am so afraid that it will get worse and most of all that it will go to my face and neck. I have been to several dermatologists and rheumatologists. Thankfully my internal organs have not been affected but based on my exams I am low on vitamin D. My dermatologist wants to put me on methotrexate and on vitamin D. I have read that morphea can go away on its own but after 17 years I still have it. I have not experienced extreme itchiness but I do have extremely dry skin.

 

I know I am not the only with this disease and there are others who have it worse than me but I have been going through some emotional breakdown and I guess what I am looking for are for some encouraging words and to think there is still hope.

 

Thanks

Viviana

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Hi Viviana,

 

Welcome to the Forum! I'm really sorry you have had your morphea become active again. I know it has to be very frightening and I understand your worry that it will spread to more visible areas. It's all very well telling ourselves there are others much worse off, but it still matters and matters a lot.

 

We have a lot of research articles about morphea that you may want to have a look at. I'm hoping some of our members with morphea will chime in - my form of scleroderma is systemic, so I can't speak from personal experience. You can also go to the main site and read the stories of others with morphea.

 

What I can tell you is to hang in there. No matter how bad things may seem now, you will still find a lot of joy and fulfillment in life. To paraphrase one of our members, you may have morphea, but morphea doesn't have you. You are much more than your skin - there is a whole person there, valuable and very worth knowing.

 

I hope you'll post often. You can vent here, cry on many sympathetic shoulders, have an endless supply of new friends who do understand what you are going through.

 

Warm wishes and a big hug,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Welcome aboard Viviana, to our get away place. Sorry to hear that you are having a problems once again. I hope starting the Methotrexate will help stop any progression of the Morphea. There is always hope. Hope for a better hour, day, week, etc. Hope gives us something to look forward to. Please tell us more about yourself and what has been done in the past for your skin condition.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Viviana

 

Welcome to these friendly and informative forums!

 

I'm so sorry to hear that your morphea has become active again. I can empathise with you as I think we all tend to worry about the progression of this bizarre disease, but I'm hoping that now that you have joined our community, you will feel happier knowing that you're amongst people who understand how you feel.

 

I have Systemic Scleroderma so am unable to advise you about morphea from personal experience, but I'm sure some of our members who are affected will be able to reassure you. I can only say that since being diagnosed I have found a wealth of help and encouragement from these forums and I do hope that you will as well. :emoticon-hug:

 

Do please post often and let us know how you are feeling.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Viviana,

 

Welcome to Sclero Forums! I'm sorry you have morphea and that it has reactivated. Sometimes that happens. Luckily there are better treatments for it now than there were when you first got it. So please hang in there.

 

:emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Viviana,

 

My name is Emmi. I'm 20-year-old girl from Finland with linear scleroderma. I've lived with this condition since I was 6 years and along the way I've got several other diagnoses as well such as Raynaud's phenomenon and reflux.

 

For the first ten years my scleroderma was just great if you can say that about any illness. It progressed at first, and then went to remission. But then again when I was like 16 it started to spread again. At the same time I started taking birth control pills and it made things even worse. Someone once told me that estrogen can activate scleroderma and after dropping them it took only few months and things were better again. I don't know if this has any scientific basis, but that was my experience.

 

It is scary to think that scleroderma might progress again and I dread that every day. But I'm still living my life to the fullest and try to make my dreams come true. People have told me so many times that because of this I can't do this and that but so far I've proved them all wrong.

 

If you want to contact me for more youth perspective feel free to do so. :)

 

Take care,

Emmi

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Hello Viviana

 

Welcome to the forums! Scleroderma is such a unique disease to everyone anything is possible it seems!

 

I'm on methotrexate for systemic scleroderma and have been for I think coming up to 2 years? I take the tablet form and found the side effects I had, nausea and fatigue went after a few months. I hope you find it helpful, do let us know how you get on.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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