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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Hope77301

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Posted 09 October 2009 - 02:33 PM

I am a daughter who is new to this. My mother who just turned 43 just found out that she tested positive for scleroderma. She has the symptoms of when you bend her fingers its painful, she is itchy all the time, she says sometimes her chest hurts like if she was to have an anxiety attack and she tired and has her bad days where she just wants to lay in bed. If anyone can give me any information of how it is and how it affects your member of the family any information may help. Its always nice to know of someone who knows more than a doctor I like to say :happy1-by-lisa-volz:

Thank you

#2 amberjolie

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Posted 09 October 2009 - 03:11 PM

Hello! I'm quite new at the whole scleroderma thing myself (was just diagnosed a couple of months ago), but certainly if you look around at the various posts, you'll get loads of information.

Sorry to hear about your mother having to go through what she's dealing with, but it sounds like she's got a daughter who's trying to find out whatever she can to help, which is always a good support to have.

#3 Sheryl

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Posted 10 October 2009 - 12:16 AM

Hope, sorry to hear that your mom has Scleroderma. It is good that you came here to find out ways to help her. Maybe one day she will also join you here to find our more and ask her questions. First your mom needs to find out what is causing her chest type anxiety type pain. That can be anything as simple as Acid Reflux to Costochondritis to real anxiety because of her need to figure out how to cope with this new disease that has befallen her. When some people are first diagnosed they have to learn acceptance of the disease. It takes awhile to come to terms with the disease and to say I am going to be a fighter and I can cope with new developments. I have to be strong for my family. But, sometimes we can't always be strong and we feel a bit sorry for ourselves. It takes learning about our disease or diseases and facing them head on. Doctor's will help us deal with each issue as it becomes the main priority. Each month it can be something different that we have to learn to adjust to or figure out what needs to be done to heal or get rid of that problem. Swelling is one of the first symptoms that several members start out with. Not being able to move the fingers can be an issue. Your mom needs to keep her fingers pliable if possible by doing exercises. Like bending her fingers back wards slightly. Laying them flat on the table and picking one finger up at a time even if it is a bit painful she needs to work them and keep them flexible. She can ask her doctor about things like this also. As for the itching it can become quite severe and her doctor can address that also. I have tried everything over the years. Finally we found a prescription product that really works for me. So, some things are trial and error. Your job is to keep your mom's morale up. Help her with the simple things that on a bad day will take every bit of her energy. Our energy gets expended quickly sometimes even before we can complete a task on any given day. Today can be an off kilter day. Tomorrow you wouldn't know there was a thing wrong with us. It is a very life consuming disease. Ok! All for now. Ask your questions and we will do our best to answer them. None of us are doctors just fellow sclerodermians or family members and or friends. We all do our best to find reasons, causes or simple helpful things to help each other.
Strength and Warmth,
Sheryl

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#4 Amanda Thorpe

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Posted 10 October 2009 - 06:01 AM

Hello Hope

Welcome to the forum this is the best place to source your scleroderma information as it's accurate and not hysterical.

Being diagnosed with scleroderma is life changing and that change needs to be adjusted to, needless to say this takes time. During the early months when my mobility was very poor I had two emotional settings "off" and "hysterical" :temper-tantrum: there was no in between. I'm pleased to say I have more settings now!

Emotionally your mother may well be up, down and all over the place as she adjusts to being a person with scleroderma. You're obviously going to be there for her during this but you also need to make sure there is someone there for you too. You will need support also.

Perhaps you mother would like to venture onto this forum herself because there is nothing like communication with others going through the same thing that you are.

I am into my second year with systemic sclerosis and I can now say I have a great life, it doesn't look anything like I thought it would but that's not such a bad thing after all.

Remember that you and your mother are at the beginning of your scleroderma journeys and the beginning can be a scarey place but be assured you'll move out of it into a better place in time. We and our loved ones all started where you both are and look at us now!

Take care and keep posting.
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#5 Deb1million

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Posted 11 October 2009 - 01:00 PM

hello Hope
thank you on behalf of your mum, as she is lucky to have such a caring daughter, and she will benefit just by having you to take an interest and share her concerns, and help around the house etc.
Having a caring family will help her to stay grounded and not panic during the early diagnosis time. Whatever you mum does, tell her (and yourself) not to read everything on the web about this illness, its only the worst cases that make the headlines, so ignore it and just stay here for sensible advice and support. It sounds like your mum has just mild symptoims at the moment, so thats good, and that may be all she ever has.
Like Amanda, I also have a full and busy life. I got through the panic stage and soon got back to normal life after the news sank in.
best wishes to you and your mum.

#6 janey

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Posted 12 October 2009 - 05:42 AM

Dear Hope,
I'm so glad that you have contacted us about your mother. As you've already seen, it's a great place to come for support and advice from people that are really experiencing what your mother is experiencing. It does sound like her symptoms are mild, comparatively, but to her, I'm sure they are extreme. Just the fatigue alone is enough to make you feel like to the worst is just around the corner. For me, the fatigue was one of the hardest thing to overcome. Fortunately, once I was diagnosed and started on medications, the fatigue lessened. I have just about eliminated it through my diet and exercise (believe it or not). The more active I am, the more energy I have. It's weird. I just make sure I don't over do it. At first my hubby had to take over the grocery shopping, but I'm now able to that myself. Too much activity can make the fatigue worse. I eat small meals throughout the day with a little of protein each time - a cup of soy milk, a piece of jerky and few nuts. Then of course I try to eat lots of fruits and vegies along with the protein. Too many starchy carbs make me sluggish. That's just my experience. We do have a section on Scleroderma and diet if you'd like to take a look.

As far as the family members, please provide her as much help around the house as possible. Here are some of the little things my hubby did that really, really helped. As I mentioned before, he took over the shopping for a while, then once I started feeling a little better, he went with me. Now I go by myself. On bad days, he carries the laundry basket to and from the laundry room. I insist on doing the laundry, so that's how he contributes. He has become a great sous chef and some nights, he cooks the whole meal. We have a housekeeper that comes in twice a month and we take minivacations where I can relax and look at some magnificent. Make sure that she makes and meets her doctor appointments. Go with her on her doctor visits and do a little research to verify what the doctor tells her. Patients need to be their own advocate now-a-days or have a family member to be one for them.

I hope that some day soon your mother joins us, but in the meantime, I think she is one lucky woman to have such a loving daughter!

Big Hugs to you both,
Janey Willis
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#7 debonair susie

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Posted 12 October 2009 - 12:13 PM

Hello Hope and as deb1million mentioned, your mom is fortunate to have such a lovng/caring daughter for her advocate. :thank-you:

Right now, this has got to be overwhelming for you both. However, we have a saying here:
Knowledge is Power
The more you both know, the easier your coping skills' job.

The ladies before me spoke to the fatigue and how b est to cope with it. It is important for your mom to rest when her body dictates...hopefully, her need to rest will ease a bit as time goes by.

I am so pleased that you found us and hope that both you and your mom feel a sense of comfort, caring and support, along with helpful information, as a part of our family.

I look forward to your mom visiting us, as many ladies mentioned, as I'm sure she will be find folks who can empathize greatly, plus she won't feel alone any longer.

Sending {{{Gentle Hugs}}} to you both :emoticon-hug:
Special Hugs,

Susie Kraft
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#8 Snowbird

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Posted 12 October 2009 - 01:38 PM

Hi Hope

I can't really add too much more just yet...but you have definitely found the right place to ask your questions and do your research on this site. You'll get factual and solid information here...best advice right now is not to read everything on the net like Deb1million said. Hopefully you, or another family member/friend, can go to her doctor appointments with her as they come up. That will help too and it's always good to have someone else there to take notes for her...it's easy to forget what the doctor said or to come away with mixed up answers, especially if she has a lot of questions. It would also be good to write down all her questions for her to take with her to her next doctors visit. Hope you stick with us and let us know how things are going. She must be very proud of you! :)
Sending good wishes your way!

#9 Hope77301

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Posted 12 October 2009 - 02:01 PM

:temper-tantrum: I don't know who wants to scream more her or me, but I have no time to be selfish..lol..Thank you everyone for your post its wonderful to actually talk to someone and know what I am talking about! You guys are great :emoticons-yes:

#10 Jeannie McClelland

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Posted 12 October 2009 - 03:40 PM

Hi Hope,

Welcome to you and your mother from all of us. I think it is harder to be a person who loves someone with a chronic illness than it is to be that person. (I'd definitely rather it be me who has it than anyone in my family.) You are a great daughter to research things for your mother.

The symptoms you describe your mother having are familiar ones to most of us. As you already may know, most treatment is directed at controlling and alleviating the symptoms/complications. There are new and more effective treatments arriving all the time and as a result, even with the most severe complications, we patients are living much longer and having a much better quality of life than ever before. When we read all the scary things out there on the web, we often assume that we are going to be very ill and maybe die. That is not a 'given' by any means. I found that when I was diagnosed and as treatment began for the symptoms and complications I had, I felt better and better. I hope your mum has the same experience.

It's very helpful to have a rheumatologist who has specialized in scleroderma (and it's great if it's someone your mother likes and trusts). Never be afraid to ask questions, nor to do independent research on your mother's treatment options.

From a personal point of view, the things my family and friends have done for me that have meant the most are gifts of time and assistance where I need it and accepting that my new 'normal' is 'normal' and not something to get all upset over. (Nothing worse than being treated like you're sick~ Who needs the constant reminder?) My handsome hubby does most of the shopping during the winter so I won't have to go out in the cold or get exposed to all the winter germs that float around. My kids know that cooking a big family meal is something I love to do, but once we sit down, their rule is that they clean up everything. Friends and family that I've always done adventurous things with slow down their pace and figure work-arounds to accommodate my O2 needs. (If you look at my profile picture - my best 4-legged friend is carrying an extra 2 small O2 bottles in her saddlebags.)

You'll know what your mum needs and because you took the trouble and found us here on the ISN Forum, I know you'll help her out the best way you can.

So, welcome again! I'm sending along a big hug for both you and your mother!
Jeannie McClelland
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#11 Hope77301

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Posted 13 October 2009 - 03:18 AM

:thank-you: Thank you again so much for the hugs and loves, I am so grateful to meet wonderful people!! Yesterday (10.12.09) I for the first time sat with my mother and read back all the replies I have recieved and boy did we cry like big babies (lol)because of the language barrier, she knows how to read but she doesn't like to write much, hopefully she will join this forum soon. Today (10.13.09) I am going for the first time with my mother to visit with her doctor. I am a bit nervous though I have a feeling I might cry like a big baby cause this is just one big rollar coaster of emotion for me cause not only is she my mother she is my best friend and I just hate to have her suffer over something that I know she can handle. I mean if she could manage with 2 kids, bills, life in general all by herself, I know she can handle everything and anything. Once again thank you so much this Forum has helped me and her and I will keep you posted on how the doctor visit goes later this afternoon.

:emoticon-hug: Thank you, hugs to all words can not explain how wonderful you guys are

#12 Peggy

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Posted 13 October 2009 - 09:28 AM

I'm late in adding to this post but seeing that you are going with your Mom to her appointment is what caught my eye. I was diagnosed with systemic scleroderma in August of 2007. This was after a YEAR of going from doctor to doctor to find out what was wrong with me. It was only because I knew deep in my heart something was wrong that I kept at it until I finally got in front of a doctor who finally figured it out and put the "puzzle pieces" together. Now I have 6 different autoimmune diseases and my life has changed dramatically.

The two things I fight daily is terrible muscle pain in my legs and arms and terrible fatigue. Unfortunately my doctor, who hails from John Hopkins and is a sclero expert, doesn't have much that he can do for me in these areas. He is trying as best he can to help with the muscle pain but he said there isn't much he can do about the fatigue and it's a complaint he hears so much from sclero sufferers.

The one thing though since August of 2007 is that my DAUGHTER has been at EVERY appointmeht I have had with my rheumatologist. She's a pharmacist and has been a godsend to me. From a mother's standpoint it's so very hard to see her face as I'm given diagnosis and test results that aren't positive and to see the worry and hurt in her face, but I also so need that extra set of ears in the room. It's been also good for my husband to have her there as support for him. This disease unfortunately affects the entire family. They all worry about me and feel so helpless but feel empowered when they know all the particulars. At least they know exactly what's going on. So keep going with her and be that other set of ears for her. You see when I finally got my diagnosis it was the FIRST time I was by myself due to the fact that my husband had run out of vacation days taking me to doctor after doctor. So I'm at another appointment and this is the one where the bad news was given. At 11:00 that morning I was told by the rheumatologist that I had sclero and when I asked her if it was fatal and if I was going to die from it she told me yes. Then I had another appointment that afternoon at 2:00 pm with an oncologist who told me that I had a protein marker that indicates that I will develop lymphoma at some point. So what a day that was and I was all by myself. I had a 3 hour ride back home with a friend who had driven me to the appointment. It was terrible. Don't let that ever happen to your Mom if you can help it. Having you there is such a gift to her and to you. You will feel empowered too knowing first hand what's going on. When they tell us things we don't always hear it all. Once I heard the word "cancer" I didn't hear anything else as I was so devastated.

I applaud you in what you're doing and hopefully some day your Mom will want to come here and make contact with all of us. I have learned and gained so much from the forum that I can't even put into words. Shortly after I was diagnosed I found this forum and to have somewhere to go to ask questions, vent, gain support, or to just share is priceless.

I wish you and your Mom great blessings and I look forward to hearing more from you.

Warm hugs,
Peggy

#13 debonair susie

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Posted 13 October 2009 - 10:15 AM

Peggy, you really spoke well to Hope's post, especially from a mother's point of view, the one effected by Scleroderma.
Nice job...you spoke for all moms whose children are working hard to understand what is happening.

:flowers:
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#14 Sweet

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Posted 13 October 2009 - 10:24 AM

Hi Hope,

Allow me to add my love and support to both you and your mother. As you have already seen you and she will both benefit from the wonderful support, information and friendship here.
Warm and gentle hugs,

Pamela
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#15 smac0719

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Posted 14 October 2009 - 01:54 PM

Hope,

It is really great that you have taken some time to seek information to better support your mom during this new phase in her life. I am near your mom's age, but my sons were younger when I was diagnosed a couple of years ago. I took them with me this year when I saw my sclero specialist so they could see the testing I go through as well as give them an opportunity to ask questions.

You've been given some great advice. Don't hesitate to utilize this site for support for yourself as well. Take care.
I may have Scleroderma, but Scleroderma doesn't have me!