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LaBellaVita01

Full Recovery/Healing from Scleroderma?

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Has anyone here heard of or know of anyone who has made a full recovery from Sclero?

 

I have personally made some changes over the last 2-3 years that have significantly improved my day to day life with diffuse Sclero, and I’d love to know if others have done the same!?

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Hi LaBellaVita,

 

Welcome to these forums!

 

I've never actually heard of anyone making a full recovery from scleroderma; as there is no proven cure for the disease, I'm not convinced that it's possible. Having said that, I received very successful treatment for my lung involvement, which showed an amazing amount of improvement (I was the hospital's star patient! :wink:) and to all intents and purposes my lung function is within the "normal" range. So whilst still having the disease and obviously being monitored on a regular basis, I'm thankful to say that it doesn't impinge on my life too much, or stop me from doing most of the things I want to do.

 

I'm pleased to hear that you've managed to make some changes over the last 2-3 years that have significantly improved your day to day life, whilst suffering with diffuse scleroderma. Of course it does affect everyone differently and so what may work for one person, may not be successful for another. However, I would say that having a positive attitude is one of the most important factors and also accepting the fact that one has a chronic disease and adjusting your lifestyle to suit it.

 

Please do let us know the changes you've made to your life, which I'm sure will be of help to our members. 

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi LaBellaVita,

 

Welcome to Sclero Forums!  As it happens, the natural course of the disease is to wax and wane, often improving on it's own even without any treatment.  This unpredictable course is what has made it inordinately hard to study potential treatments for the disease.  Often a treatment will sail through the first two phases of clinical trials, and then flunk third phase, right when everyone feels excited about announcing a possible "cure" for scleroderma. 

 

Because of this wavering course of disease, our own individual experiences don't count for very much to scientists, and only the large scale clinical trials can be relied upon.  That said, I've had plenty of treatments and lifestyle changes myself that seem to have greatly improved my health, at least for the time being. 

 

The actual danger lurking in such improvements is that we'll let our guard down, perhaps stop having our regular scleroderma expert follow-ups, or abandon a treatment that we haven't given sufficient credit to for our improvement.  So I rejoice when I notice improvements, keep doing whatever I've been doing, hope for the best, and stay plugged into my medical and support resources, as you never know, for sure, if or when the scleroderma rollercoaster is going to change course. 

 

:hug-group:


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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I am so glad your lungs are working better and I hope they keep going on strong.

 

That reminds of a story my mom told me; she was having what she described as a rattle in her lungs (this had to be around 40 years ago, they didn't have MRI or any other such things) and the doctors could see it in xrays, so the doctor thought it was cancer and they removed 1/2 of her right lung. This tells me I am glad for medical care now. Anyway, back to the story -  at one time or the other she had choked on a peanut and with all the coughing part of it stayed in her lung and as the body thought it was bad it encased the peanut!

 

I'm just glad she got better; that says we have come a long way.

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8 hours ago, quiltfairy said:

I am so glad your lungs are working better and I hope they keep going on strong.

 

 

 Thanks, Quiltfairy; I consider myself to be extremely fortunate. Thankfully, my lungs were in pretty good shape to start with and I was treated very quickly, before the inflammation turned into irreversible fibrosis. Nowadays, I tend to feel a bit of a fraud when I go for my checkup appointments and I have made the ironic little quip of "I've actually only come here for the company":wink:  to my consultants when they comment on my lung function tests. :lol:

 

We certainly have progressed on the treatment front; I would certainly have died from pulmonary fibrosis had it afflicted me years ago.

 

  Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Quote

"I've actually only come here for the company":wink:

 

Hi LaBellaVita,

 

I should perhaps explain that our entire scleroderma support staff is taking comedy classes right now, in an effort to lighten up. 

 

Jo is one of our star pupils :fairy:and she's definitely won our Joke of the Day award, with this gem! 

 

:hug-group:


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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