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Magazine Story Mentions Scleroderma


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#1 barefut

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Posted 16 April 2007 - 08:08 PM

I rarely ever buy magazines, especially those at the checkstands, but I saw a fitness magazine with an article about boosting metabolism and I tossed it on the conveyor belt.

I was just now reading it (Yes, I SHOULD be asleep already! :rolleyes: ) and it has a story about 3 sisters, one who has scleroderma (sounds like diffuse systemic). The story was not about scleroderma but about the sisters' struggles with their health and the power of optimism and positive thinking.

The description of scleroderma was accurate but not indepth. It described her symptoms and how she suffered with it. I was pleased to see the mention of sclero. Any little bit of any type of media attention is good for awareness.

I have started mentioning scleroderma to anyone who asks me about my health. I had that chance today in the radiology waiting room. It actually feels good to spread awareness and people are usually genuinely interested.

I guess I'd better buy some bracelets. They also make good conversation starters.

If anyone wants the name of the magazine I will PM it.

Good Night,
Barefut

#2 CFMBabs

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Posted 16 April 2007 - 10:04 PM

Hoorah for you! I'm right there with you my friend.
Every opportunity, every bit of exposure is the only way to get the message across. I did a radio spot for Raynauds -- not blowing my own trumpet here! I volunteered because there are so many people out there who don't realise there is even a name for the condition they suffer, indeed many just pass it off as no more than a nuisance or something they just have, with none or very little support.
If we can get the condition highlighted, many more people will get treatment they might never have known existed. My own general practitioner knows nothing about the condition! And when I was first diagnosed with Raynauds at the age of 19, my general practitioner said it was nothing to worry about -- go away!
I have scleroderma and spent years in the wilderness just passing my Raynauds problem off as a nuisance yet I couldn't explain why I felt so ill all the time. I never knew that Raynauds could be the first symptom of Sclero if I had then I could have gotten help many years ago.
I highlight the condition whenever I can. I write for another medical information magazine called Online which is a charity for people on artificial nutrition such as myself. I wrote an article about sclero and how it caused my problems. I had quite a few letters from people who have never heard of the condition and wanted to know more. Also the one's who have sclero and they were relieved to know that it wasn't just unique to them.
Let's get rid of sclero-- what? Scleroderma my friend it's a condition and I suffer from it.

Best wishes
Barbs xxx

#3 summer

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Posted 16 April 2007 - 11:44 PM

Hi Barefut,
Yes I would like to know what magazine you purchased, you can give me a PM .

Kind regards
Celia ;)

#4 janey

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Posted 17 April 2007 - 03:23 AM

When I sent our my Pampered Chef email to family and friends (including friends I haven't seen in quite a while), I had three people reply and ask "Do you have this (scleroderma)?" All mentioned they had gone to the website (sclero.org) and it was the first they had heard of it.

One of them insisted on having lunch and really drilled me as to what was going on. It had been 3 years since we had seen each other. She also placed an order with Pampered Chef. Of course her comment when she saw me was "You don't look ill." How many times do we all hear that one?" :blink:

Big Hugs,
Janey

#5 Sweet

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Posted 17 April 2007 - 04:33 AM

Janey,

It never ceases to amaze me when I hear someone say what you just did. That family and friends didn't know you had this disease. I often wonder have they chosen to block it out? Did they never really hear you in the first place? Did they brush it off as nothing serious because most of us look OK? It's strange to me.

I have one friend that has told everyone in town for years that I have fibro instead of Lupus and sclero. Of course it looks like fibro is in the picture now, but it's weird to me that people can't grasp this disease. I even have preprinted information about it, articles, books etc that I share with people....

Progress....slow but sure.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 kelowna52

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Posted 17 April 2007 - 05:26 AM

I surely do understand this saying, YOU DON'T LOOK SICK!, how frustrating this is to all of us that the desease doesn't show so much on the outside. Even my own family questions me about having Scleroderma. I feel like saying to them, why is it if you have Cancer or some other well known desease they accept that, but not a desease they know nothing about. Some people are just so ignorant. I feel guilty if I'm having a good day because they really do think your faking it. What is a person suppose to do?

Jackie S.

#7 janey

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Posted 17 April 2007 - 05:35 AM

Don't you just love how you can silence a room by saying "scleroderma?" At a family reunion in October, a couple of my in-laws went to an art showing and when they returned, I learn the show was a collection of Paul Klee. I mentioned how I would have gone had I known because I've always wanted to see a show of his that displayed his lifetime of work. "Afterall he had scleroderma during the last 7 years or so of his life and apparently his work really changed as a result of the disease."

Man - you could have heard a pin drop. No one responded and the mother-in-law changed the conversation. The hubby and I looked at each other and just shrugged.



#8 Margaret

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Posted 17 April 2007 - 09:45 AM

Hi Everyone,

Years ago, when the autism generation was starting, many poeple with Down Syndrome (DS) kids had a hard time getting their kids diagnosed with autism because many doctors didn't think DS kids could have both. There are many of us parents who, through years on a specific ds-autism site, have been able to educate doctors, school districts, and other parents about dual diagnosis.

I, too, try to educate as many people as possible about scleroderma and UCTD now. I like the comparison to cancer, Jackie.....you are right, though, people don't question you on your diagnosis of cancer but everyone tells me how 'healthy' Gareth looks. Because of this site, Gareth's teachers and aide and all the families on the ds-autism know about sclero. Like this forum, we have a very compassionate group of families that are pro-active in spreading information.

Take care, Everyone.
Margaret



#9 barefut

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Posted 17 April 2007 - 10:45 AM

Janey,

I know what you mean about that uncomfortable silence. With some people, as soon as I say the word "scleroderma", they look shell shocked. I think because it's such an "ooey" sounding word that people automatically think I'm contagious or something. Boy, to those people I can't explain fast enough what its all about and that they can't "catch it". laugh.gif

A mother of one of my preschool kids asked what all my out of town doctor appts were for (because I've had to cxl preschool). I thought, "Good I can educate another person" but she was one of the shell shocked ones and was too distracted by the kids to hear me out, so she left in a hurry. I hope she comes back! laugh.gif

I remember back when we thought I had lupus and my hair was thinning, I mentioned it to my hairdresser and the FIRST thing she said as she pulled her hands away from my head was, "Is it contagious?!" I could tell no amount of explaining was easing her mind. It was the quickest and worst haircut I ever got.

AHHH life with chronic illness....so challenging in more ways than 10.



#10 Lemew

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Posted 17 April 2007 - 01:26 PM

I will be retiring soon. My employer will have a reception for those of us leaving. We have 2 minutes to say a few words. I work at a university not many people know of my Scleroderma. I am struggling to find the appropriate thing to say to bring attention to our disease. I am always ready to tell anyone about it. This is a different forum. Any help would be much appreciated.

Lemew