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Long Odds


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#1 dimarzio

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Posted 07 February 2016 - 02:31 AM

Am I correct in understanding that Systemic Sclerosis affects 1 in 10,000 people and that 6 out of 7 sufferers are female?

 

If that is the case, the chances of a male getting it are 70,000 to 1 - that's incredibly long odds isn't it?

 

Does anyone know of any other statistics or probability info?

 

Is there any data on the probability of the limited form becoming diffuse?

 

I have esopheagul, stomach and bowel involvement as well as a lot of aches and pains plus some odd skin patches developing on my shoulders, though to be honest, apart from my skin feeling thick and odd, it's not causing any dis-comfort at the moment. - does all of this indicate limited or diffuse?

 

I've read some stuff that says nobody knows what causes this disease (other than the immune system not turning off), some suggest an inherited pre-disposition (though I've never come across anyone with the disease until now), I've read some stuff suggesting links with vinyl chloride and heavy metals, and some suggesting lifestyle, though these seem fairly tenuous.  Are there any other studies suggesting possible causes?



#2 Margaret

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Posted 09 February 2016 - 01:59 AM

Hi Dimarzio,

 

I do understand your concerns about the odds.  My own son was diagnosed at at age 18 and, upon reading the background of scleroderma, I couldn't believe he had it. My dad did have rheumatoid arthritis, but this was something completely unheard of, with internet information that scared me. Gareth did have all the positive blood work, but only internal involvement. Instead of sine scleroderma, his diagnosis is UCTD.  

 

At the time, he did not have Raynaud's or skin issues.  It's been 10 years. He was placed on Plaquenil and it has slowed the progression.  He can't take the Methotrexate because he also has immune deficiencies.  I do know the damage it is causing internally. His esophagus has to be stretched every year or so and is twisted and contorted like a curly straw. He recently had neck surgery and it took the doctor an additional two hours to cut through the *wood* to get to his vertebrae. His aorta, esophagus, and trachea had become one solid mass.  I feel very fortunate to have found this site. It's very up to date on information and advice.  He didn't die in the first few years, as I was led to believe by initial research.  He's doing quite well and we take each challenge as it comes.  Do remain optimistic. There are people on this site who have had this disease for 10, 20, 30 years!!

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD



#3 dimarzio

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Posted 09 February 2016 - 04:23 AM

Thanks Margaret. What is worrying me is how quickly the illness has progressed. Ill since January 2015, diagnosed in July/August 2015 and the faintness, eye problems, insomnia, stiffness, aches and pains esophageal, stomach and gut problems, and raging Raynauds have really accelerated.

 

I wonder whether those who get it at a young age start with more healthy bodies and can live better with it than those of us who get it later in our lives when our bodies are half worn out already.



#4 judyt

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Posted 09 February 2016 - 03:00 PM

Hi Dimarzio,

 

I hadn't ever thought of it that way, I know I have had Scleroderma for49 or so years and possibly longer.   My disease appears to have had a long and very gradual development.     Yes I did consider that at 22 I was reasonably fit.   I was a competitive swimmer and even up until the mid 1980's could swim a mile a week without thinking about it.   Now I can't even get myself safely in and out of the water at all.   The last time I tried to swim any distance in a tepid pool I couldn't move fast enough to keep warm and Raynaud's overtook me.

 

When I was first diagnosed properly in 2003 there was very little information available on the internet.  My brother found me a Swedish site which I read avidly and decided I had what seemed to be a "Classic Onset".   That is every 10 years or so there was a new development within me, each one adding to the last ones and at that time it was called CREST and I did indeed seem to have all of those symptoms but only mildly.   Now I have internal involvement from 'stem to stern' as Shelley has put it and as I get older these things are impacting more and more on my life and well-being.

 

The only CREST symptom I still have are the Telangiectasia on my hands and face  and I do love being free of Raynaud's attacks.

 

So it all goes on ad infinitum, we are all different and all have interesting stories to tell but the over riding symptom I have noticed with everybody is the Overwhelming Fatigue.   I would be surprised to hear of anybody who does not suffer in this way.

 

Best wishes

Judyt



#5 Shelley Ensz

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Posted 09 February 2016 - 03:32 PM

Hi Dimarzio,

 

That's an interesting question you raise.

 

As it happens, strangely enough, overall, systemic scleroderma has a higher mortality in people who are younger at onset, rather than older.  For more info on that see, Prognosis and Mortality in Systemic Sclerosis: Age at Onset.

 

Of course, it's never a good illness to develop at any age, and there is always the caveat that scleroderma affects everyone differently.

 

: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.

#6 dimarzio

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Posted 10 February 2016 - 05:19 AM

Overwhelming Fatigue - I simply can't get tired at all.  Due to the milder weather, I've been walking for an hour or two every day for the last few days.  Whilst I often feel faint, I'm never tired at all - in fact I've been on various sleeping tabs for a year due to chronic insomnia, but even with these I'm lucky if I get 4 or 5 hour sleep (often a lot less, yet I still don't feel tired).

 

I do wonder whether the faintness could be pulmonary hypertension, but nobody has suggested that this could be the case so far, so I'm trying to put that out of my mind.



#7 dimarzio

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Posted 16 February 2016 - 05:34 AM

Are the statistics I provided accurate or does anyone have any other data suggesting longer or shorter odds?



#8 judyt

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Posted 16 February 2016 - 11:09 AM

Hi Dimarzio,

 

Perhaps, for whatever reason, you are fixated by the statistics.   Forget them, no matter what somebody says about the odds of this or that happening with your health, there seem to be just as many ways in which they get overturned.

 

I remember 30 years ago when our Dad was diagnosed with cancer and we siblings were forever asking what is the chance of this or that happening and nobody was prepared to give an answer,   The same when our sister had the same fate befall her, and the only answer I have ever received is that nobody really knows.   No matter what happens for one the likelihood is that the opposite occurs to another.

 

Accept that you are you, unique in every way.   Not a bit like me or Jo or Shelley - just yourself.   Deal with what comes along, have a long term thought in the back of your mind about how you might cope in the future, and then live day by day.   You might be writing to us later this week that something which has been bothering you has miraculously disappeared, it does happen and more often than we give credit for.

 

Take care

Best wishes

Judyt



#9 Shelley Ensz

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Posted 16 February 2016 - 12:04 PM

Hi Dimarzio,

 

If you are worried that your faintness could be pulmonary hypertension, you could ask to be evaluated for it.

 

As it happens, I've had faintness for decades, due to orthostatic hypotension, which basically means that when I stand up, my blood pressure goes down (instead of up).  I'm also winded extremely easily and need to approach everything very slowly, but I do not have pulmonary hypertension.

 

Fatigue is just part and parcel of scleroderma and many other autoimmune diseases. Unfortunately, the fatigue can also cause worry (like, to try to figure out what is causing it, or lamenting what we cannot do because of it) and then the anxiety can cause worsened fatigue!  It's quite a horrible catch-22, and one that all of us are vulnerable to. See Scleroderma Fatigue, which includes a video by Amanda Thorpe.

 

Perhaps its possible -- and bear in mind that I am not a doctor and have no medical training at all! -- but I don't know anyone with pulmonary hypertension who could walk for an hour or two, with no problems. It is often hard to even pass a six-minute walking test with PAH. I should note here that the six minute walk test is a bit dicey with scleroderma, because we can flunk it without having PAH due to other systemic effects of scleroderma.

 

What is absolutely fantastic is that you are actively researching your illness and learning everything you can about it!  The downside of that is that we can scare ourselves witless in the process, so I find it helpful to pursue ways to relax and deal with anxiety as being just as important as learning about scleroderma and its symptoms. Especially because our anxiety can worsen the disease process.

 

Knowledge is power, but power can be used for good or evil. It's evil when it's worsening how we feel. It's great when its giving us reassurance (eventually) and confidence in our ability to work with our medical team, and our support system, to deal with this the best that we can.

 

In the beginning, that can mean reading and freaking out, then seeking support and input, and calming down. Later on, we tend to skip over the freaking out portion faster and easier, especially as we gradually transition to focusing more on the happy and fun and even silly parts of our life.

 

: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.

#10 dimarzio

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Posted 17 February 2016 - 08:21 AM

I don't ever seem to get tired, just faint. This whole illness started with a bout of insomnia and I've been on sleeping pills for over a year. At the start, I was fairly active, but since the Raynauds kicked in, I've not been able to do a lot. On a mild day, I do 3 or 4 half hour walks, but today it's pouring with rain and I'm stuck indoors.

I'm finding it hard to sleep, always feeling faint, hard to concentrate, hard to swallow, permanent constipation, guts are making horrible noises, bad wind from both ends and trapped wind in the guts, cold arms, legs, hand and feet. Aching coming and going in my hips, shoulders, back and neck and cramping pains as well.

Even when I loosen up by going for a walk, I sit down and I'm stiff again within a few minutes - like my body needs to keep on the move all of the time.

Sat on the PC writing this and I feel like I'm about to fall off my perch at any minute.

#11 Shelley Ensz

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Posted 23 February 2016 - 05:17 PM

Hi Dimarzio,

 

If moving around makes you feel better, by all means, do it! 

 

On inclement days, perhaps you could watch and follow some arthritis exercise tapes, or get some indoor exercise equipment, or go to a nearby gym or warm pool. Exercising indoors is great, and doesn't have to cost a thing, nor even any equipment!  I often set the timer for however long I want to walk, and then just make loops through my place. It's a very small place, so I walk around mostly in tiny circles, but hey, it's a lot better than nothing.

 

I also use simple things, like a soup can to do arm curls, or try to lift a cast iron pan. Look around your place, see how inventive you could get. Consider doing stretches while waiting for things to cook, or marching in place while brushing your teeth.  I always incorporate some simple stretches into my shower, as it is easier to move when the muscles are warmed up.

 

Think outside the box to reclaim the activity that you are craving!  Why, you could even claim it as a new hobby!

 

: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.

#12 Choclit

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Posted 26 February 2016 - 03:35 AM

The research data from Mayes (2003) suggests that in the US there are about 58,000 cases of systemic scleroderma and 80% are female.

 

I always blame my limited scleroderma diagnosis on the fact that I am a feminist! :-)


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#13 Margaret

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Posted 03 March 2016 - 01:44 PM

Hi Ed.....I'm curious to know new statistics since the one you posted is from 2003....13 years ago.  I'd be interested to see if those numbers have climbed higher.  Where would a person find newer numbers?

 

Take care, Everyone.

Margaret



#14 Choclit

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Posted 04 March 2016 - 03:48 AM

I just reviewed the most recent literature and it gives a range for the US and Europe of from 150 to 300 per million population which gives a range of 48,000 to 96,000 cases.  The studies are too inconsistent in methodology to see any trends.


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#15 Tully

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Posted 04 March 2016 - 09:05 PM

Hello dimarzio,

 

Like you, when it was suggested I might have scleroderma , I was surprised at the "statistics" and how much I did not match them. Male, 45, good shape, non drinker, non smoker, no drugs..... The first indication I had was the tightness and pain in my hands. Within 5-6 months, the tightness was basically from head to my toes. So, what started out localized, quickly became diffuse. I just recently found/joined this forum and my intro thread is ''diagnosed on Sept 29, 2008".  I hope yours stays localized, because it is a game changer if it goes to diffuse. And like you, getting a good night sleep has become impossible without medicine, that I refuse to take. Be careful about keeping your hands and feet warm and dry. The Raynaud's will cause ulcers and they hurt a lot and are slow to heal. Being stiff and achy is just a normal state for me.

 

The cause of SD is a mystery. I've read that the Choctaw Indians have a higher than normal rate than anyone, but most cases are localized in the legs. My great grandmother was full blooded Choctaw. I've read that trichloroethylene can be a contributor, 20 years before my first symptom, I worked for a company that used it by the barrel. And I would sneak some home to help clean my bike chain with. Any chance you were in the Corps and stationed at Camp Lejuene? There's a huge issue with contaminated water and SD is listed as one of the specific diseases caused by the bad water. BTW, my dad was, but I never lived there.

 

Hang in there and don't hesitate to ask me any questions

 

Tully