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Newly Diagnosed

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13 replies to this topic

#1 Sarah A

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Posted 28 September 2008 - 05:23 PM

I was just diagnosed with Scleroderma last week. They believe I have systemic scleroderma. I would like any advice from anyone who also has this form. I am 30 years old, married, have 2 children, am a 5th grade teacher, and am training for a marathon in February.

#2 jefa


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Posted 28 September 2008 - 08:18 PM

Hello, Sarah, and a warm welcome to the ISN Sclero Forums. I am sorry to hear about your recent diagnosis, but I am sure that you will soon find you have come to the right place for top quality information and support. Here are a couple of links to get you started.

Systemic Sclerosis: Diffuse Scleroderma

Emotional Adjustment and Scleroderma

Try not to get too overwhelmed with it all. There are many forum members in similar situations who live full, busy lives. Please feel free to ask any questions that arise and join in posting on any of the threads that interest you.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 epasen


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Posted 28 September 2008 - 10:22 PM

Sarah A, the best advice I can give you is that you should do everything you feel you want and you're able to. Don't let this diagnosis define you or let you down in anyway. Live life to the full and enjoy every single moment, even though scleroderma may bring many hardships to you along the way.

Take care,

#4 Sweet


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Posted 29 September 2008 - 05:07 AM

Hi Sarah,
Welcome to the Sclero Forums! Really glad you've joined us, but I'm sure sorry it's due to your recent diagnosis. You've received some great advice so far, so I will just add a big welcome!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 YFChoice


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Posted 29 September 2008 - 05:40 AM

Sarah.......I've had SD for 26 years and my wife has had it for 15 years. I still hike in the mountains and ski and snowshoe. Sometimes I'm a cyclist. My wife also plays golf. We still work and play. I am 52. I know more about SD than it knows about me. I refuse to give in, give up or give anything to this disease.

So, learn all you can. Take what works for you. And, by all means, run that marathon in February.
~ You have to think anyway.....you might as well think big

#6 ozzy69


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Posted 29 September 2008 - 06:03 AM

Hi Sarah,

I was just dxed with Sclero about a week ago. That is great you are training for a marathon. I exercise four to five times a week. It helps me from getting so stiff. I too have systemic scleroderma, but I am trying to learn everything about it to. I am 38 years old & have three boys, 19,17 & 15. Welcome. :)

Nina Lynn

#7 Amanda Thorpe

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Posted 29 September 2008 - 11:36 AM

Hello Sarah

Welcome to the ISN forum, you are in the right place to get expert info and first hand advice.

I have diffuse systemic scleroderma, diagnosed just over a year ago and would have loved to have had access to this site then!

We look forward to getting to know you better when you feel ready.

Finally, You mentioned a marathon, obviously I know nothing about it but maybe you could raise moneyf or ISN? :lol: Just a thought.

Take care.

Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)

#8 Nina


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Posted 29 September 2008 - 01:26 PM

Welcome Sarah ~ So glad you found the ISN site, stick around and you'll be ever so glad! This is the most informative, supportive and all around great site! I hope you've checked the links that were suggested, the information is endless.
Although I've had Scleroderma (Limited/CREST) for a very long time, I'm just getting diagnosed recently. I only wish I had known about this site earlier, but I figure, better late than never! There is a wonderful bunch of people here who will listen, respond and support you whenever you need it.
And as many others have already said, GO RUN THAT MARATHON!!! :)
Much love,
Nina (DE)

PS ~ Not to confuse you so early on, but there are two Nina's, I'm from Delaware, so I sign with (DE)

#9 razz


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Posted 30 September 2008 - 03:54 AM

Welcome Sarah A,

Sorry to hear of your recent diagnosis. I am 49 now and was diagnosed with systemic scleroderma 10 years ago when my two daughters were 10 and 12 years old. I would encourage you to read our stories and links. This is the place with the most updated research, information and great support from fantastic people. Whenever you have questions or need to vent we'll be here for you. Take each day one day at a time. I agree with everyone to go ahead and train every day and run your marathon in February. We'll be rooting for you!

Live well, Laugh often, Love much

#10 KarenL


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Posted 30 September 2008 - 05:58 AM

Welcome Sarah,

Wow, I'm inspired just reading all of the replies you've gotten! As you can see there's lots of hope. Sure there will be challenges, but scleroderma doesn't have to ruin or even change your life. You may have to make adjustments, but you are going in healthy. My advice would be to learn all you can and be armed with information. Ask lots of questions and stay in shape, that's your best defense. Oh and eat well. I too have three children and although they were teenagers when I was dignosed I had had sclero for ten years and didn't know what it was. During that time I was a full time teacher, like you and was a Brownie leader and cub scout leader and did all the things a mother with three little kids does. So.....life goes on. You are already a fighter and will do well for yourself and your children. Welcome to an awesome intelligent informed bunch of people.

One excellent starter book my doctor gave me...The Scleroderma Book, a guide for patients and families by Maureen Mayes.


#11 Peggy


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Posted 30 September 2008 - 09:54 AM

I wanted to send a welcome. When I was diagnosed with systemic sclero I came here and I thank heavens that I did. The wealth of information and the caring that you receive is wonderful. My advice is to make sure that you are being doctored by a rheumatologist that is very up on sclero. It is a disease that is so rare that you need to stay on top of everything and you need to have a team of doctors who know what they are doing. There are so many things that can pop up and there are so many different treatments. I have 5 other autoimmune diseases in addition to the systemic sclero and the last one was just diagnosed this last June. I wish you good luck and please come back here for any questions or if you just need support as you will have those days too.

Warm hugs,


#12 smac0719


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Posted 30 September 2008 - 01:10 PM

Hi Sarah and welcome. I was diagnosed 1/07 and joined a month later. I found the site helpful, but then I let it overwhelm me at first. Don't make the same mistake and take it in bit by bit. I met some great people and it was the people and wealth of information here that brought me back. As you can see from the responses there are many people who are willing to listen, share and offer some personal knowledge where they can.
I may have Scleroderma, but Scleroderma doesn't have me!

#13 canon


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Posted 30 September 2008 - 05:27 PM

Hi Sarah A,

I am so sorry you have scleroderma. Every one here will certainly support you and help you through this. They have given you good advise already and can't think of anything to add.


A happy heart is good medicine.

#14 Buttons


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Posted 01 October 2008 - 02:39 AM

Welcome Sarah everyone is friendly and its good knowing there are so many of us in similar situation. I was diagnosed 14 months ago with Systemic Sclerosis and it did take a little while to get over the initial shock of it so do give yourself time. You have found out early which is much better for you.
One other thing is that we do have a chat room, one is on Wednesday 7.00 pm UK time & I think the other is on Sunday (American time), someone else will be able to tel you I'm sure.