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night owl

Sclero age years

12 posts in this topic

To Anyone

 

From another post I have mentioned I have had Sclero 30ish years, in terms of Scero years and curiosity has got the better of me, as I have looked at a lot of posts from newly diagnosed people who ask for support.

 

Hope you don’t mind me asking but are there people out there who have had this condition for 5 years, 10 years, 20 years etc?

 

Gil

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Gil,

Congratulations on having successfully dealt with this disease for 30ish years! That's very encouraging to all of us. :woohoo:

 

I was diagnosed in August of 2003, 10 months after the onset of "known" symptoms - so about 9 years for me.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I was diagnosed 7 years ago and found encouragement on this site when I saw that there were many who had been dealing with the disease for so many years. The internet is a scary place when you look up mortality in scleroderma, and although I feel deeply for all of us who suffer, those of you who made it through so many years gave me hope.

 

miocean


ISN Artist

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Hi Gil,

 

Mortality with scleroderma can depend a lot on the type of scleroderma. For example, localized forms such as morphea and linear scleroderma are never fatal.

 

The longest I've heard for someone with systemic scleroderma living is into their mid-90's. Judy Tarro, who many here remember as "Jude the Grouch" lived with systemic scleroderma for over 50 years, before she passed away from complications in her 60's. Age of onset, severity, and treatments can all affect outcome plus any form of the disease can go into remission on its own (even without any treatment). Usually though the disease waxes and wanes, worse sometimes and better at others.

 

For those daring enough to read the facts on the matter, we cover this on our main site Systemic Scleroderma: Prognosis and Mortality.

 

I say, we should all rejoice for every day we make it, regardless of what type of scleroderma we have. Plus remember, we are just as susceptible to all the regular things that bump people off, including accidents. Oh now isn't that a happy thought for the day? I shouldn't be allowed to post forum messages at bedtime.

 

:emoticon-insomnia:


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 Gil,

 

I consider that I have had recognisable CREST since 1966 and by my reckoning that is 46 years in November. The first I was aware of something being wrong was a Saturday in November of that year when my husband and I set off to visit Coventry. We had travelled (by sea in those days) from NZ to the UK for our OE. We arrived in August and by November were starting to really notice the COLD! I will never forget the misery of that day. I was so cold my hands and feet were white blocks of ice and my head was thumping with my first ever migraine. I remember that I already had very peculiar cuticles and the first signs of vascular incompetence, I don't think I had any telangectasia at that stage but I certainly did, not many years later. It took until 2003 when I was hospitalised with haemotemesis (vomiting blood) for a diagnosis to be made but the reading I did online after that confirmed to me that what I had been putting up with all those years was in fact a classic case of Limited Scleroderma.

 

I am, relatively, no better or worse now than I have ever been. I have never been particularly physically fit and although I have been able to do much more in the past than I can now, I think that taking into account my age at any given time I am pretty much the same. That being the case I am expecting to plod on (plod being the best description for me) for another 20 years at least.

 

Now if somebody could just come up with a miracle cure for the ulcer on my ankle which is approaching it's first birthday I would be a very happy lassie.

 

Here's to a long and resonably comfortable life to all of us. Although this is a horrible disease, we probably all know somebody worse off than us.

 

Judy T

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My first symptom was 34 years ago - Raynauds with some ulceration. My father had it more than thirty years before being diagnosed. Was diagnosed when he developed kidney failure and lung fibrosis. As a child we were told that my father had cold hands because he smoked, and heartburn after eating because of a hiatal hernia. This is very slow-onset scleroderma. I developed secondary Sjogren's about 12 years ago, then myositis and pulmonary hypertension a few years later.

 

Last year we lost someone in our group who was 93 years old, and had originally been diagnosed in 1962.

 

Craig

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Hi Gil,

 

I'm a comparitive newcomer to Scleroderma, having only been diagnosed for the last 22 months, although I think I was suffering symptoms for at least 18 months before that.

 

It's only with hindsight that I can look back and realise how unwell I felt for quite a while before my lungs were involved but I was very fortunate to be dealt with so quickly and efficiently once I was referred to a lung specialist.

 

Thanks for the warning, Shelley; I'll be extra careful crossing the road in the future!! ;) :lol:


Jo Frowde

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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I was diagnosed this year, although I have had the symptoms much longer than that, probably about 10 years when I think back on it. Took them long enough to find out what I had, and not that I was mental hehe.

 

Cheers

Jean

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Hello Gil

 

I am into my forth year with scleroderma and last year I came close to "game over" with myocardial fibrosis and subsequent class 3 limited heart failure, there are only 4 classes and I went in straight at number 3. I got out of breath having a conversation and climbing the stairs was like climbing a mountain but thanks to my having a bi ventricular implantable cardioverter defibrillator put in I am much better! Even when it seems bleak it can still get better!

 

Congrats for living so long with Mr Scler O Derma...thinking of charging rent? :lol:

 

Take care.


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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Hi Gil, I've just reached my 5th scleroderma birthday. Things gradually got worse for about 2.5 years and then I started immunopsupression and things have gradually imporved over the last 2 years. I intend having many more birthdays.

 

Lizzie

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Hi Gil,

I agree totally with Shelley and the other posters.... I was diagnosed in 2005 and had such rapid progression it was scary.

But, after a few years, the progression slowed and I feel like nothing will stop me now, I just won't allow or accept it. Of course I still do progress, but am on an even keel most of the time.

My goal is to live long enough to tell people what I REALLY think! Maybe run a few over with my wheelchair....

Taking care of ourselves should be our first priority if we want to hang around. So I won't be cliff diving any time soon.

Cheers to us for surviving and giving hope to all the souls who seek us for help.

Carpe diem!

Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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