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Support for family members

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#1 Blueice111605



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Posted 02 October 2016 - 05:04 AM

Hi all, I'm new to this site.

My mom has scleroderma. Her hands got swollen last August and by December,she could barely use them and had open sores all over her hands and arms. She is seeing a specialist in Denver (which I am happy to see listed on this site!). She's doing IVIG treatments but still, nothing seems to help.

Unfortunately, my brother and I live 800 miles away from her. My dad has to work everyday and even when he is home, he isn't the best help. My mom doesn't really have any friends and the neighbors who claimed to be friends won't come over.

I guess what I'm trying to say is that my mom doesn't have much of a support group. Scleroderma has rocked her world for over a year and it sucks. She can't wash her hair, open her purse, or even open the door most of the time. She is losing her mind and has talked about "offing herself".

I don't know what to do. Does anyone have any kind of advice?


#2 Joelf


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Posted 02 October 2016 - 08:19 AM

Hi Casey,


Welcome to these forums!


I'm sorry to hear that your mother is suffering with scleroderma and is experiencing so many unpleasant symptoms. I can understand how difficult it must be for her to cope with day to day living, especially if she is finding it hard to get any support from people around her.


I would suggest that perhaps she should approach her primary doctor, to see if they can offer her any advice and help. Perhaps it may be possible for a nurse to visit her on a regular basis, or perhaps someone connected with the practice, to help her? Maybe the doctor or her specialist could put her in contact with any support groups in her area.


I've included a link to our Support Directory Pages, which I hope you'll find useful and informative.


Kind regards,

Jo Frowde
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager

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International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 05 October 2016 - 03:59 PM

Hi Casey,


I'm sorry to hear that your mother has scleroderma, and that she's having such a difficult time adjusting to it.  It's super that she has a listed scleroderma expert, and that she's on IVIg.  Treatments often take time to kick in, and simply stabilizing disease can be a huge improvement.


Talking about offing herself certainly sounds as though she is suicidal, unless she's always been the dramatic sort and frequently refers to things like that, but not seriously. You and your family need to be the judge of what's normal, what's not, but suicidal talk is a medical emergency and worthy of a 911 call, especially if you can't be there in person to assess the situation. At the least, her medical team should be made aware of how she is feeling, because there are enormous opportunities for her to feel better, function better, and enjoy life more.


Scleroderma is not a *reason* to be unhappy but it is certainly an opportunity to learn that inflammation can affect the brain (causing depression), and that we all need to find new/more/better sources for support when we develop chronic illness. It's normal for the good-times friends to evaporate into thin air when something serious comes along, but they might be reacting more towards her attitude, than her illness.


This forum would be a super place for her to hang out, once she has her feet on the ground, but we aren't professionals and can't do the heavy lifting that may be required first, such as perhaps medication or counseling, if they are necessary. Which, from this distance, it sort of sounds like. Sadly, depression can cause an even quicker demise than scleroderma, so it's nothing to ignore.


Many of us are living with all sorts of varieties of scleroderma, and still enjoying happy marriages, delightful family members, and we have developed new friendships far and wide. But very often that has been with the assistance of our doctors, psychologists,and counselors at home at first, to help us learn how to turn lemons into lemonade and to develop the extra coping skills that all sorts of new frustrations and disappointments. With help, your mother can return to her cheery natural self, find fresh joy in her life, and develop new hobbies and friendships.


Please be sure to get the maximum support resources for you and your family, too. It's a stress on everyone, and should never be underestimated.


She's off to a great start, with a diagnosis, an expert, and a treatment. You can all get through this phase, I'm sure, but feel free to rely on all the professionals that you need to do so most successfully.




Warm Hugs,

Shelley Ensz
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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.

#4 Kathy D

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Posted 06 October 2016 - 01:46 PM

I am sorry to hear of her struggles Blue.


Depression is common in autoimmune diseases, both those that have them and those that care for them.  Get her psychological help please, and it might be a good idea for you too.  Make some phone calls and see a professional, good advice for all:)

Diffuse Scleroderma Diagnosed March 2009