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Men And Scleroderma


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#1 ssakar

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Posted 31 December 2006 - 03:10 AM

I was wondering if there were any men on this forum?

I have read that women get Scleroderma more than men.........just curious why?

Sakar

#2 Steve

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Posted 31 December 2006 - 04:32 AM

Hi Sakar. My name is Steve, and I have Diffuse Scleroderma. I'm also one of the moderators on this site.
There are a few men who regularly post messages on the message board, but you are correct, there are far more women with this disease than men. I don't know the reason why, but I'm sure people will chip in with their ideas on this one.
Thank you for posting

Take Care,

Steve Dickson
ISN Assistant News Guide for RSS Newsfeed
International Scleroderma Network (ISN)

#3 GocartMoz

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Posted 31 December 2006 - 05:16 AM

Hi Ssakar,

I was diagnosed with diffuse scleroderma in July and I am a man. Steve is correct, the disease hits women far more than men, but unfortunately we are at risk as well. In fact, there are studies indicating the diffuse form of the disease is more progressive in men. Unfortunately, I cannot answer the why question. I think that is a question many have asked with no real answers.

Dave

#4 Elehos

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Posted 31 December 2006 - 08:20 AM

Hi Sakar,

One of the things that was brought up to me by my doctor, as well as some of the medical info I've read online, is that environmental toxins seem to play a major role in the development of certain diseases, and sclero is one of them. I'll throw in my two cents on some of the differences between men and women.

1. Women are exposed to an enormous amount of toxins on a daily basis simply just from the cleaning products they use around the house. Read the labels and tell me if it's really possible to use most of them in "a well ventilated area" while your head is in a stove, or you're stuck in a bathroom, worse yet behind glass doors in the shower. Ok, include a sledge hammer with the next bottle or can, and I'll make sure to ventilate the room well!

My husband is a mechanic, and there is an enormous amount of medical info in recent years on the rate of cervical cancer and lymphoma among the wives of auto workers, although the men don't suffer any illnesses themselves unless they constantly inhale asbestos. He was given some of this info by the company he works for because they're trying to keep the wives safe, and it scared him. At this point, 50% of the wives at that company have been diagnosed with cervical cancer or lymphoma within 2 years of their husbands beginning work there, and I'm sure there are other work places that can cause this as well.

2. Stress. Most men work 40 hours a week, then have weekends off, along with at least some vacation time, sick days, certain holidays, and personal days. I spent 2 decades running 80 to 105 hours a week earning $, taking care of the house, hubby, and kids with no vacations, no sick time, no personal time, then doing double time on all holidays and weekends, and I was already "sick" while doing this. Babies and toddlers wake up frequently throught the night, so forget about good sleep at night, and you can't take a nap during the day! Men seem to allow themselves time off (and rightlully so at times), but women seem to feel a sense of obligation that is often self destructive, and rarely get the help they need. It was so much easier when I was living the 40-50 hour per week life!

The label of "women's work" doesn't help since that usually means "light, easy, and quick" in the minds of far too many husbands. No doubt, there are wonderful men out there, but it's still a fact that most don't help out that much, if at all, usually because they don't see what women see. I found that it has to be spelled out very clearly that, "The tub needs to be scrubbed and I can't bend. Would you please get (whatever cleaner) and the scrub brush and do it please?" Then thank him like he climbed Mount Everest (lol).

3. Pregnancy. Not so easy on the body, is it? I wouldn't trade my kids for the world, but being pregnant, then the years raising them is very taxing on mind and body. Not to mention running on 2 to 3 hours of sleep a night for months on end while bleeding profusely will wear you out. "Monica Monthly" puts some wear and tear on you when you're not pregnant as well!

4. Body fat. Women tend to have more body fat, and who knows exactly what gets stored in there. We're in a high-chemical world, regardless of labels such as "organic." Those foods get the same rain as any other farm out there.

5. Doctors. Especially those from the 60's and 70's. As I mentioned in another post, "Take a tranquilizer, get a hobby, or get a hysterectomy. Done, you're fixed." I've had more than my fair share of those for decades, and only found two good ones when I was pretty far gone. Sadly, even one female doctor blew me off! It's not always easy to find a doctor to listen and consider all the symptoms.

Ok, there you have it, my editorial.

Best wishes to all,
Elehos

#5 janey

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Posted 31 December 2006 - 08:56 AM

Sakar,
You might be interested in reading this section on Causes of Scleroderma: Hormones and Chromosomes.

There are so many possible causes to scleroderma, but the fact that women are 3 times more likely to get it than men (as well as other autoimmune diseases) does bring up the question "do hormones and chromosomes have something to do with?"

I contracted my MCTD when I was perimenopausal, once my periods started changing from the regular 28 day cycle. I've had two doctors tell me that there is a possibility that if I had had children, I possibly could have trigger it with the pregnancy.

For years, my hubby and I both work long hours, so we shared the chores and responsibilities of a home. My job (college instructor/director) was more stressful because of the time commitments and various hats I wore. He was self-employed and had more control over his situation, thus less stress. When I was between semesters we took off on vacation and hiked off all the stress for the job. So I can't really relate to most of what Elehos eluded too, except maybe the "body-fat". I've got my share of that and always have - even when I was lifting weights and climbing mountains. smile.gif My hubby also comes from a family with strong genes and long lives (even for those that smoked for 40 years!) All my siblings and my mother have an autoimmune disease, just not the same ones. My dad died from a brain tumor at 60. So do genetics also a play a part in it?

I spent the first years wondering why and how, but finally had to let that go. Now I concentrate on how to keep it from progressing and how to deal with the problems I do have. That's enough to think about! blink.gif

Big Hugs,


Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 sclerster

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Posted 31 December 2006 - 02:34 PM

Hi Sakar,
My name is Doug, I have Systemic Scleroderma diagnosed in May of 06.
I live north of Boston, and treat at BU medical center. I believe you
are correct, women have a much higher incidence of this disease.
I hope all is well with you.

Sclerster

#7 CraigR

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Posted 01 January 2007 - 08:30 AM

I'm Craig and I post ocassionally. I have CRST/Scleroderma, first symptoms (severe Raynauds) onset in 1977. I have some lung involvement, but no esophagus problems. Also have secondary Sjogren's, epilepsy (since 1970 - easily controlled). I went through a nasty bought with Burkitt's lymphoma in 2002.

My father also had CREST/scleroderma. He developed severe lung problems in his 50s.

Neither of my two sisters or my mother have had any automimmune diseases.

As for environmental exposure, there were so many things years ago - my father was a very heavy smoker, so I was exposed to smoke. I worked on cars often, was exposed to furniture refinishing chemicals. As a child living in Okinawa, trucks regularly drove through the neighborhood spraying DDT to keep down the mosquito population. Now we are much more careful - but it doesn't seem to have reduced scleroderma.

It might be interesting to find out more about the geographic incidence. I saw a documentary about asthma, where they noted that it almost never occurs among chidren brought up on farms. Might there be similar incidences of scleroderma?

Craig