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11 replies to this topic

#1 concerned daughter(23)

concerned daughter(23)


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Posted 04 December 2007 - 10:17 AM

Hi my name is Ashley and my mother was diagnosed with scleroderma last year. since then she has really did nothing to help fight the disease I think she is just going to let it get the best of her and just die. I am here seeking help from others living with this disease. I realize that I really dont know the pain everyone is going through because I am not living it but I am living through it with my mother. please help do you guys know any support groups or any organiztions in the indiana area for support. My mother has the raynauds part of the disease the worst right now. her fingers are tight and swollen and they are cold and turn blue, that is how she first discovered something was wrong also she has systematic sclero how do you determine if it is limited or diffuse?

#2 scampie5


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Posted 04 December 2007 - 10:41 AM

hi your mum needs to follow through with what the specalist said about her having scleroderma he should have adviced on this and orgonised tests for your mum so glad that you are looking into this to help your mum she is obviously unsure about this condition and maybe this has worried her hope you can help in some way encourage her to seek more help and advice best wishes Lynn x x

#3 Michelle2


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Posted 04 December 2007 - 11:00 AM

Hi Ashley~

You have found the right place to get support and some answers that will help ease you mind. Dealing with a progressive disease is difficult for everyone involved. I'm sure your mom is very scared especially dealing with the unknown. "We've" all been there "those of us with Sclero" and still deal with it on a daily basis. This is a wonderful forum with absolutely incredible people. Lead your mom to this site. She can see for herself that she's not alone in this fight. We are all here for her. We know what she's going through.

Lots of hugs! :)
Take care and stay warm,


#4 Snowbird


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Posted 04 December 2007 - 11:44 AM

Hi Ashley

My name is Ramona. First, let me start to tell you that I am sorry to hear of your mother's illness but I think you have come to the right place to help you and hopefully, your mother to understand this disease.

I was diagnosed with Systemic Scleroderma Limited CREST a very short time ago so I am also new to this forum. I can only speak for myself, but I was very afraid in the beginning (and sometimes I still am because you know what could possibly happen to you although you don't really know when or if it will even happen for sure (I think it's fear of the unknown, at least that's what I call it; if you know what I mean?). We can read too much on the internet too which may not be totally factual and can be scary, and of course I did that as well (maybe your mother did that and it scared her too?). Accepting these types of illnesses sometimes takes alot of time for some people (I'm still adjusting) as we are all different and everybody handles things differently. I get the feeling you are strong and you likely get it from your mother, she might just need a little more time, it's really hard to think clearly sometimes when you are just plain scared. It sounds like you are a great supporter and in your mother's corner, good for you!

My Rheumatologist (specialist) determined what disease I actually have because they are experts in these types of diseases. He did physical tests on me (to name a few, he checked my skin, my joints, and my nailfolds, discussed my health history, etc, those types of specialist things that your family doctor may not normally do (my family doctor tells me he is not the expert, that's why he sent me to one although I happen to think he's terrific!)...so there's lots of things the doctors need to review and discuss with your mother. Her doctors are the only ones that can tell her what type of disease she has.

I hope you stick with this forum, they have helped me! I'm sure you will hear from some of our other members who are way more knowledgeable than me and will be able to give you links to some information you may wish to read about. They helped me with that on this site too. I just wanted to let you know my feelings in case they could help you with understanding where your mother might be coming from?

Also, this website is world wide (I'm from Canada), which is really good because we share information about our illnesses as you already know. Hopefully, someone will be able to give you some connections for Indiana, sorry I can't help you with that one, I'm too far away geographically?

Just remember, this website is full of great people who I'm sure will be able to help you!

Hugs, Ramona
Sending good wishes your way!

#5 jaxs


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Posted 04 December 2007 - 01:09 PM

hi there and welcome, I was dignosed with limited systemic sclrosis last july 06, I was ill for about 3 years befor that, I find it hard to be ill and at times I know im in denial, I used to be very independent,and never went to doctors unless I really needed too, I still find it hard to take in a lot of what I read and belive that this is happening to myself, at times I do suffer great depression at which I have finally been to doctors about , :rolleyes: I get very scared at times not only for myself but I have 5 kids too,its a lot to get my head around,and anyone liveing with it or just around it, and I feel at times helpless and through coming on to this site, I find im getting alot of gd advice and info, in my experience I think the more I learn and understand about this condition the better I am to except, u take care and hope your mum finds peace soon. jaxsx
live life for today and not for tomorrow

#6 Sheryl


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Posted 04 December 2007 - 01:28 PM

Hello Ashley and Welcome.
Sounds like you are describing limited Scleroderma for your mother. Limited is a less aggressive form. Diffuse is more extreme in the skin hardening area and bone reabsorption in the fingers and more drastic shrinkage in the mouth. There are several things that are different. Read up on the two types and you will learn so much. Have your mother join us if she wishes to. Or, you can be her spokes person.

So many new members these past several weeks. Welcome to all of you. Sorry, you have come across this horrid disease. We all learn together and help each other when we have our down days. This is a great group. Sheryl
Strength and Warmth,

Sheryl Doom
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International Scleroderma Network (ISN)

#7 peanut


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Posted 04 December 2007 - 02:22 PM

It's so great that you're being proactive for your mom. We are all probably having raynaud flares now. Here are some non-prescription things that might help. You might buy your mom some gloves, mittens or fingerless gloves to wear around the house or shopping in the frozen food section. You could also get her some of those pocket hand warmers. If you're mom is into manicures they have something called paraffin dip. It feels wonderful, great for the skin and very warming. The key is protection from the cold.

Janey would know more but I think limited is only skin related symptoms. Diffuse involves the organs. The only way your mom would know if her internal organs are affected is if she went to the doctor and had them run the usual tests: blood work, ct scan, pft, physical exam.


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

#8 truman


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Posted 04 December 2007 - 04:45 PM

Hi Ashley:

Mom is just trying to get through the diagnosis. I denied for 16 years and hid all symptoms. I'm out in the open now with doctors, friends, relatives.

Hey, it's a tough realization.

Looking at this site, you can see that it's tough, but somewhat manageable. I wish I was sitting at the dinner table in the kitchen consoling your mom. You are a dear daughter to look for assistance. I'm sorry, you may have mentioned her age, I don't remember.......how old is she?

I can only tell you to remain by her side. You seem to have more of a handle on this than she does at this point. Is there a Mr. in the household. If not, it just may be too overwhelming for her and she feels alone. You seem to be a daughter who will show her the way.

If she just has Raynauds, tell her to relax; there are easy ways to deal with that.

If I don't see you posting here again, Happy Holidays and tell Mom we're here for her. ;)

It is what it is...........

#9 LisaBulman


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Posted 05 December 2007 - 05:55 AM

HI Ashley,
Welcome to the forum! Yopur mom is lucky to have a caring daughter like you! Many of us find ourselves in situations where family and friends abandon us because we are sick. Hang in there with her. She is probably in a bit of denial and just doesn't want to deal with what she was diagnosed with. I have been living with this disease for almost 15 years now. The key word is "living". Once she can come to accept her diagnosis that is when she will feel comfortable trying to fight it. She needs to see a sclero specialist if she hasn't already. There is some info here on scleroderma and it's types. Have your mom come and read some messages!

Lisa Bulman
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(Retired) ISN Sclero Forums Assistant Manager
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International Scleroderma Network (ISN)

#10 Sweet


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Posted 05 December 2007 - 02:42 PM


Welcome to the Sclero Forums love. It's so good to have you here. I think its great you are tuning into all of this for your mom. My hope is you'll learn enough to share with her or that she'll get curious and log on herself!

You've received some great advice so far. I look forward to interacting with you further.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#11 Kamlesh


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Posted 05 December 2007 - 07:14 PM

Been there and done that. It is a common reaction in the beginning to do nothing. Life is too precious to waste and need to enjoy each day.
Pardon my bluntness, but doing nothing is a great mistake. There are many advanced treatments available and can provide almost normal life. You need to become your mother’s strength and convince her to seek treatment before the disease progresses further.
Kind regards,


#12 debonair susie

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Posted 06 December 2007 - 09:05 AM

It's a good idea to hunt out a support group, if not for your mom... then, for yourself. Possibly, you can check with a hospital nearest where you live... to get information regarding support groups in your area.

I'm also hoping your mom's raynauds is being treated, as well as her other symptoms. If not, as others have already encouraged, please urge her to do so.

Please... keepus posted on how you/your mom's doing.

Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)