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I Hate Scleroderma! Please Help...

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#1 BlueCherryBlossom



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Posted 06 March 2007 - 12:34 PM

My grandmother was diagnosed with Scleroderma a little over three years ago. The kind she has attacks both her inside organs and her skin. Over the past 3 years, our family has watched her suffer as her skin tightened and she became very weak. Two weeks ago she began having difficulty breathing. It has gotten so bad now that she can only breathe because of her oxygen. Approximately 4 days ago, she started getting "pneumonia" like symptoms. And now we've found out today that it's not pneumonia and that it's the disease.

The doctors have no clue the life expectancy of someone with Scleroderma and like everyone has said, it depends on the person's particular case.

So based on all of this information and based on what you guys have seen with other patients and loved ones... what comes next?

What have you seen in other people at this stage??

I hate this disease....


#2 Shelley Ensz

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Posted 06 March 2007 - 05:18 PM

Dear BlueCherryBlossom,

I'm sorry to hear your grandmother has scleroderma. It must be very difficult for you and your whole family.

There's really no predictable course of scleroderma. At any point the illness can settle down and quit progressing, occasionally even reversing itself. But lung involvement can be very serious, sometimes. See our page on Lung Involvement for some more ideas.

We're glad to have you here!
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.

#3 peanut


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Posted 06 March 2007 - 05:45 PM

Hi Bluecherryblossom,
Being diagnosed is not easy. I am 27 and was recently diagnosed. One of the first questions I needed answered was how long do I have. It's not an easy answer to find. Scleroderma progresses in each person differently and can go into remission like Shelley said. I too have lung involvement.

I have found encouragement through meeting people who have managed the symptoms for 20+ years. I figure if they can live a long life so can I.

I'm sorry I don't have any solid answers for you. Perhaps there's a good support group in your area?



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 barefut


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Posted 06 March 2007 - 07:28 PM

My thoughts are with you, your grandmother and your family. It is so very hard to see someone you love suffer. My heart goes out to you.

Your grandmother is lucky to have you in her corner fighting for her.

Best wishes to you all,

#5 susie54


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Posted 07 March 2007 - 02:34 AM

So sorry to hear of your grandmother's struggle. This disease can become very threatening and then it can calm down so don't give up hope. With good treatment, she could turn around and feel much better. The weakness is hard to watch when someone has been so strong all their life. Susie54

#6 kramer57


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Posted 07 March 2007 - 02:42 AM

Dear BlueCherryBlossom,

I'm sorry to hear about your Grandmother; I hope she feels better soon! When I was diagnosed with Scleroderma, I was afraid of what it would do to me - I've had esophagus problems for a long time, now my skin is involved, and I assumed I would get progressively sicker. But after being on this forum and a couple others, I realised that Scleroderma affects everyone differently - I have seen people be very sick and hospitalized, and then go into remission and start feeling better! I have a lot more positive attitude about it now. I am dealing with symptoms as they come along, trying to keep my body as mobile & flexible as I can, and try not to worry about what lies ahead, because with this weird disease, it's hard telling what will happen next.


#7 nan


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Posted 07 March 2007 - 03:37 AM

I am so sorry that your grandmother is so sick. As everybody else has stated it is hard to predict what will happen next with this disease. I agree that you shouldn't give up hope. Take care!

#8 janey


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Posted 07 March 2007 - 04:10 AM

Hello Darlin',
I'm so sorry that your grandmother is suffering from scleroderma and improvements in her health are not being seen, but rather the opposite. What kind of doctors does your grandmother go to? Are any of them scleroderma specialists or even have valuable experience working with scleroderma patients? This is a rare disease in comparison, so many doctors haven't seen it before so their treatments are hit and miss.

We do have a page on Scleroderma Specialists that you might want to visit and see if there is one in your area. Just getting a second opinion from another rheumatologist is better than waiting to see what happens.

As others have said, it's hard to predict the progress of this disease because it's different with everyone. The main thing is to stay on top of it and when something new pops up, go to a doctor. Also, if a medication isn't working, change the medication. It is good that your grandmother has you and your family to care and support her. Sometimes the patient can't speak for what they need, so the more you know about scleroderma, the better you can help her.

I'm so glad that you have found this forum and have joined us. We are here to support you, your family and your grandmother and to provide information when you need it. So please, don't hesitate to ask questions or just post an update on how grandmother is doing. We're here for you both!

Big Hugs,

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

#9 Sweet


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Posted 08 March 2007 - 05:23 PM

Hey Sweetie,

I'm really sorry to hear about your grandmother. I truly feel at times this disease is harder on the family than it is for the patients. We had to see other suffer and be sad due to our illness.

Please look at the links that Shelley and Janey have provided for you and know that we are here for you.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)