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Why Doesn't Scleroderma Get The Attention It Needs?

breast cancer

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#1 miocean

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Posted 05 October 2012 - 09:53 PM

October is Breast Cancer Awareness month and my town is going all out. The fire hydrants are painted pink. They have painted the lines in the street pink. All the stores are decorated pink. There are pink balloons everywhere. Tonight the stores in town had festivities and music and several donated a percentage of their sales. Coming up there will be a huge walk here with thousands of people expected to walk for Breast Cancer Awareness. It is a wonderful thing to see so many people work together on this cause.

I know that cancer is a terrible disease. I lost my father when I was 18 and my mother a decade ago, as well as several friends. I know women who have breast cancer who are considered cured and others who have died. I have a neighbor who has just gone through very aggressive treatment and is the process of reconstruction and lost another neighbor a couple of years ago. I know what it is like to go through the suspicion of breast cancer, fortunately everything turned out fine with me.

But we all know that scleroderma is a terrible disease also. I lost my mother-in-law to it, my best friend's mother, and some of my sclero forum friends. I know how it affected all of my organs, took a job I loved away from me, and isolated me from my friends. I know how all of you suffer, the things you have given up, the parts of your life lost. I know the procedures you have gone through, the body parts/organs lost.

I rationally understand that it is a numbers issue, that many more are affected by breast cancer than scleroderma. But there is a part of me that emotionally doesn't understand it. I want to shout out 'but what about us?" When are you going to put even a small part of funding into more research and searching for a cure? Almost everyone has heard of Lupus or Multiple Sclerosis...

I do not mean to minimize the seriousness of breast cancer or any other disease. I just wish there was a way to bring more awareness to scleroderma. I did write to my congressmen to have them create a rare disease bill and fund more money for research, and have written to make scleroderma a recognized disease for disability which it now is.

Sigh (as Shelley would say)...

miocean
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#2 Amanda Thorpe

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Posted 10 October 2012 - 02:17 PM

Hello Miocean

I here ya! I feel overlooked by the barrage of TV commercials for one cancer charity after the other although when a family member was being treated for cancer, I couldn't watch the commercials for crying, so neither am I belittling cancer, its impact, its need for funding.

I have this awful disease that totally devastated my life and therefore my husband's and no one has even heard of it? I can't be the only one surely? I recently picked up a new booklet about scleroderma by a UK organisation and from reading it you'd think scleroderma was a walk in the park, did you know it can settle down after a few years and even disappear (this comment is made without any distinction between localised and systemic), did you know that internal organ involvement is relatively rare? Does this describe your experience of scleroderma or that of anyone you know? No? Me either!

It's this sort of misinformation that feeds false hope and false hope helps no one! For example, after 5 years I have finally realised that my mobility won't improve and medication isn't going to do much more for me so I need to address my mobility, or lack of. I am finally trying to get an electric wheelchair and stair lift, something I could have done last year, when I had the money, and should have done last year, when my mobility was just as bad and was not going to get any better. I just didn't realise it.

We need to get information out there about scleroderma but that has to include how severe and life changing the disease can be, something organisations continually shy away from. Upon diagnosis I was given a leaflet (ironically by the same organisation that produced the leaflet referred to above) and from it I gleaned that my hands would become cold and I should wear gloves when getting food from the freezer. What a relief to know that's all scleroderma does!

Take care.

Take care.
Amanda Thorpe
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#3 judyt

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Posted 10 October 2012 - 04:45 PM

Oh Amanda!,

Yes it is frustrating. I know from bitter experience of being told that all of my symptoms are rare and unusual and probably (my interpretations I must admit) all in my head!!!! I just needed to try harder - well that is what my Anglo Saxon genetic background told me. HOGWASH!!!

Yes I also know from my own experience that one can have no outward (i.e. skin or joint) involvement but that doesn't mean it doesn't hurt and frustrate us on the inside. Yes symptoms can retreat without reason or warning - my Raynauds moved on a year or two ago. Don't know where it went - hope it wasn't to your house,

I got to my general practitioner one day last week, having had to park way down the road because the only spot in their carpark was a disabled one. I huffed and puffed and got myself generally fed up. My doctor could see my frustration and fatigue and promptly wrote me out an application for a Mobility Card - which I acquired and have been using but with some guilty feelings because I can walk, and I don't appear disabled.

My cousin who is in a wheelchair permanently still can't see that my incontinence is a disability. Most other people don't know or understand either so I will just have to develop a thick skin (figuratively speaking). Nobody can see that I have Autoimmune Chirrosis of the Liver or that my Oesophagus would be useless if it wasn't for gravity. But for all that we put on a brave face don't we? Nobody really wants to appear sorry for themself even though we have every reason to, and life would be no fun at all living in Miseryville.

It is OK to take advantage of everything that comes along to help - good on you for realising that and getting yourself sorted. We sold our beautiful home on the beach where I had friends and interests because I simply couldn't manage a steep site and a home with stairs. We are both very happy where we are now, right on the beach again (but not quite the same) on a flat site so I can actually enjoy a bit of gentle gardening but I do miss the people I know.

On a more positive note, I am going to the very first Scleroderma Seminar I know of that has ever been held here in NZ. I heard several months ago that there is a Rheumatologist here now who has a special interest in Scleroderma and a group of people like you and me have organised a day's seminar next Wednesday. Not in Auckland unfortunately but only a bit more than an hour south in Hamilton. Not a great flash affair in a swish hotel like the Leukaemia and Blood Foundation one that Ian went to a couple of weeks ago - just a gathering in a church hall, but it is a start, and has got me thinking that I should really be doing more to help our cause along, if I just wasn't SOOO tired!!!

It is almost 1pm now and all I have done so far today is get myself up and dressed. As well as having this little bleat.

Keep up the good work.
Best wishes
JudyT

#4 Amanda Thorpe

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Posted 12 October 2012 - 03:50 PM

Hello Judy

I should qualify my post with the statement that some people do get better, look at our own, lovely Jo Frowde, she still has and always will have scleroderma but she improved.

Anything is possible with scleroderma that's for sure!

Take care.
Amanda Thorpe
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#5 Joelf

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Posted 13 October 2012 - 11:19 PM

Thanks Amanda; I consider myself to have been extremely fortunate!! :)

Jo Frowde
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#6 Shelley Ensz

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Posted 15 October 2012 - 02:26 PM

Miocean, they even painted the lines in the street pink?!

Well then, let's start thinking of it this way. Systemic scleroderma is almost always accompanied by an interesting case of Raynaud's. Raynaud's makes fingers (or toes, or any part that is affected, for that matter) turn dead white...and occasionally blue or purplish, and sometimes a dandy shade of red upon rewarming. But it is best known for White, and that is probably the color change that got our attention the most, before diagnosis.

Therefore, ALL of the white lines in ALL of the streets, everywhere in the world, must be a symbol of Scleroderma Awareness, right?! :yes:

And that means the only town on earth that isn't aware of scleroderma....is your's, Miocean, with it's pink street markings. :crying:
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.

#7 NorthStarHope

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Posted 22 April 2013 - 10:16 AM

  Hi everyone,

 

            Wow!! Miocean you must have read my mind on this one; I actually have been bothered by this same thing for sometime now; that pink is everywhere. Not saying that it shouldn't be because I recently have had a cousin suffering from breast cancer; I truly feel so bad for her and at my age I have thought a lot about what I would do if I had it, but the thing is, what can I do for scleroderma awareness?? Well I suppose I do my very best to bring scleroderma awareness to people in my own way and every time I mention the word scleroderma people ask "what's that??", so I tell them. 

 

Thanks for touching base on this subject!!


northstarhope* :emoticons-i-care:  :thank-you: 


#8 miocean

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Posted 30 April 2013 - 06:28 PM

They are now putting pink bows on all the poles in town...and the pink lines and hydrants survived hurricane Sandy so we are in the pink of things here!!

NorthStarHope,
I have the opposite reaction than you. When I tell people I have scleroderma they usually tell me someone they know who has it. Just the other day this happened at the dentist, a new receptionist saw me with the oxygen and then told me her sister-in-law has CREST and goes to the same doctor I go to. It seems to be very prevalent around here.

I know many who have been impacted by breast cancer. It's amazing the progress in treating the disease since the public has become aware of it and money has been put into research. I lost both my parents to cancer and too many friends. All diseases are bad.

Hopefully, money will be put into scleroderma research and better treatment options will be found, maybe a cure. I've written letters to the government to support rare disease research and received letters back saying they voted for the legislation but who knows where it went after that.

miocean
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