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Very VERY Concerned Daughter

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#1 Concerned Daughter

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Posted 21 September 2011 - 06:01 PM

Hi everyone!

This is my first time on something like this. :)

Anyway, my mom's had scleroderma for who knows how long, as well as Raynaud's Syndrome, and watching her suffer for so many years with these two combined has been hard.

I know that not much is known about scleroderma.

A few weeks ago my grandmother (mom's mom) also got diagnosed with scleroderma.

Me and my sister are now quite worried that we could be diagnosed later on in life.

Is there anything we can do to try prevent this from happening?


#2 miocean


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Posted 21 September 2011 - 09:04 PM

Dear Concerned Daughter,

First of all, you have come to the best place in the world for information and support for scleroderma. There are thousands of pages of medical information backed by real life experiences of those that deal with the disease. Here is a link to the page on Scleroderma and Genetics.

I understand your concern. My mother had some issues that are symptomatic of the disease but was never diagnosed. I have no children but worry about my niece who in her mid 20's has health issues that a person her age shouldn't have, especially fatigue and body aches. I am very open with her about my disease. When she went to her doctor she mentioned her aunt has scleroderma and fortunately her doctor was familiar with it and immediately asked to see her hands. She is fine at this point.

There is an ANA test but the test alone will not give a diagnosis so don't bother asking for it unless you experience symptoms. Diagnosis is usually symptom based, backed up by the test. It is a very difficult disease to diagnosis as everyone experiences it differently.

I would advise you not to worry about something that hasn't happened and may never, but also to be informed and aware and if you or your sister begin to experience symptoms you bring it to the attention of your doctor. Your knowledge will help you with your mother and grandmother as well. You can search for just about anything on the forums or medical pages. To do a search on the forum, use the search box on the top right of this page To search the medical pages, go to the "Medical" tab at the top of the page and put in your search.

I hope this will help you.

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#3 Shelley Ensz

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Posted 21 September 2011 - 09:18 PM

Dear Concerned Daughter,

Welcome to Sclero Forums. I'm just sorry you had to join because of your mom and grandmother both having scleroderma. I send my best wishes to you and your whole family.

As it happens, there are two rare forms of scleroderma that can occur in families. We have a single reference to one of them which is called Familial CRST with Sicca (a single report from 1977). There is another version called Familial Progressive Systemic Sclerosis.

This does not mean, however, that you and your sister are automatically destined to develop scleroderma. It's possible that you might never develop autoimmune disease of any kind. However, as I understand it, there is an increased likelihood that you will develop at least one symptom of any autoimmune disease plus a greater probability that you would develop an autoimmune disease but not necessarily scleroderma. This is because a variety of autoimmune diseases tend to cluster in some families.

Beyond just living your life and healthily and enjoyably as you can, there's no known way to prevent the onset or progression of scleroderma. Keep in mind though that anyone (and everyone) including you are more likely to suffer the far more common ailments such as heart disease, cancer, diabetes and Alzheimer's. Therefore it is not worth spending much worry on any single possibility since that would increase stress and stress weakens the immune system.

The best you can do is simply remember to get a good physical annually. Take reasonable care of your health. Do not bother with getting antibody testing in the absence of any disease -- because you are quite likely to carry some antibodies which mean nothing at all in the absence of symptoms. However, being positive for them might make you anxious yet still mean absolutely nothing and would not lead to a diagnosis without any symptoms, either. (And there would be no treatment at all available, in the absence of symptoms, for there would be nothing to treat.)

Think of it like this. You probably have relatives who have had heart disease, diabetes, or cancer. Nearly everyone does. Those diseases are far more likely to affect you than scleroderma PLUS it is worthwhile to spend some effort on the ones that are at least a bit preventable.

However, it would be excellent for you to become more involved in Sclero Forums. You could pick up a great many tips and tricks to help your mom and grandmother cope better with scleroderma. It is such a multifaceted disease that it really requires a lot of knowledge on the part of both patients and caregivers for the best possible outcomes.

Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Shelley Ensz

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Posted 21 September 2011 - 09:27 PM

Dear Very Concerned Daughter,

Janet and I were both writing our messages to you at the same time. When I finished mine, I found her message pending for approval. She actually said it so beautifully that my message was redundant. (Kudos, Janet!)
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.

#5 Robyn Sims

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Posted 21 September 2011 - 10:36 PM

Hi All,

There is nothing more I can add to these wonderful replies.

Like yourself "Concerned daughter" this subject has been raised by two of my children, whose sister has scleroderma.

Worrying never prevented anything from happening so let's get on with living each day to the full.

As a mother with a child (albiet now 37 years old) with scleroderma, I can empathise with you in regard to watching perhaps progression of the disease and not being able to help. However if we keep looking at the glass half full it makes for a better life.

I have have had a keen interest in Scleroderma for over twelve years and have noticed the amazing improvement in treatments and this is most heartening.

So glad you posted with your concerns.

#6 Joelf


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Posted 22 September 2011 - 01:54 AM

Hi Concerned Daughter,

A very warm welcome to these informative and helpful forums!

I'm sorry to hear that your mother and grandmother have been diagnosed with Scleroderma and I can understand how worried and anxious you must feel. The other members have given you some excellent advice and like Robyn, I can't really add much more to it.

The only thing I would mention is that we do recommend that you and your family consult a Scleroderma specialist as sadly many rheumatologists do not have the expertise to deal with this complex disease.

I'm very glad that you and your family have found our forums and joined our community and I do hope that you will continue posting and let us know how you're faring.


Kind regards,
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#7 tarah


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Posted 14 August 2013 - 07:34 PM

Hi concerned daughter.

I fully appreciate your fear, but I want to reinforce what others have said. There are many more important things in the world worth worrying about than  something like this which is out of your control.


When I was diagnosed with Diffuse Scleroderma some 3 years ago now, my Grandmother said that her husband had something written about Collagen on his death certificate.


Sure enough we searched and found the death certificate: cause of death, pneumonia. Secondary causes; collagens disease.


I mentioned this to my specialist and she agrees that he probably did have Scleroderma, but so little was known about it then that the term collagens disease was used. Then the family stories of my Grandfather being plagued by pain and difficulties breathing, but much was blamed on the war and the time he served in the battlefield being bombed with agent orange and being a farmer all his life.


For a while Mum was so apologetic for seemingly having contributed to my disease. I very quickly had to reassure her that; without her I wouldn't be here at all, nor would my own beautiful son.


Thank you Mum for my genes! Scleroderma is only one aspect of me. Yes it stinks! but it is only one part of who I am.


You too are not defined by the disease your Mum and Grandmother has. Instead spend time with them, love them and don't allow fear to get in the way.


Good luck :VeryHappy:

#8 Amanda Thorpe

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Posted 19 August 2013 - 02:24 PM

Hello Tara


My mum blames herself for me having scleroderma, autoimmune diseases seem to have run through the matriarchal family tree but as far as I know it's just me with scleroderma. Oh well, but what I don't get is how come my identical twin has no such illness?!


Take care.

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