Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


I'm New Here...

  • Please log in to reply
14 replies to this topic

#1 Hope



  • Members
  • Pip
  • 1 posts

Posted 30 March 2007 - 06:09 PM

I really don't know where to start, or what to ask...
But here's my story, I guess... the abridged version...

When I was a senior in high school the doctors thought my mom had carpal tunnel, so they did all of the surgery and nothing helped... So flash forward to this summer, and though they had been through a million different "problems" the came to the conclusion that she had scleroderma.

The thing is, nobody told me for a while. I'm 19, going on 20, and I'm well into college... meaning I'm not home much. My dad sat me down one day and told me that my mom had about the worst type of scleroderma you can get and that it meant that eventually, she was going to die.

I asked him how long, and he said the doctor said that people usually had up to 10 years after diagnosis... my mom has technically had it for about 4 years now... 6 left. It's kind of crushing... but I think it's probably worse on him... at least now since he's around it more.

I just keep thinking about all the things she won't be around for... and I know it's selfish... but it doesn't really change anything.

Again... I don't know what to say exactly... I really just need someone to talk to... especially someone my age... I figure this is a good place to start.


#2 Elehos


    Silver Member

  • Members
  • PipPipPipPip
  • 196 posts
  • Location:Upstate NY

Posted 31 March 2007 - 12:56 AM

Hi Hope,

I'm not exactly your age--41 and pushing--but I do know there's a young lady around your age from the UK by the name of Louise on the board, so maybe she can help out. There are so many of that really haven't mentioned age, so maybe there are more younger people, and hopefully they will read your post and respond. Aside from the age, there are are a number of people here because someone they love dearly has been diagnosis'ed with sclero, and you might find a lot of comfort from them as well.

The "deadline" that is often given by doctors, and quoted on websites, is an average lifespan after diagnosis, but not a guarantee that a person will die within exactly 10 years. That's like saying every human being has an exact temperature of 98.6 when mine tends to be 97.4. Everyone is different, they respond to meds and treatments differently, and some in the statistics might not have been getting medical treatment, not to mention that 10 years ago there weren't as many options out there.

The best thing not to do is get scared or depressed, especially since that will help your mom, too. It doesn't sound selfish to think of things you'd want her to be around for either--it sounds like a daughter that loves her mom and wants to share her life with her! Having goals has helped me with the sclero, especially since you will get sicker without any hope, and I think that your mom would be the same way with wanting to share so much with you. I'm so sorry for you and your dad, and do hope that others will come along to offer their encouragement, as well as good info on medical treatments.

Hugs to all of you,


#3 Sam


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 639 posts
  • Location:Delta, Ohio

Posted 31 March 2007 - 02:26 AM

Hope, I can't beleive he said up to ten years, that is so 1980's of him. Well Hope one thing is for sure there is many treatments out there to help with the symptoms of having scleroderma. To say you have 10 years is not an answer anyone wants to hear. I was told the same thing in 1996 well its 2007. I am not dying. I actully do pretty good except for being really tired most of the time and I have aches and pains too, due to fibromylgia and osteoarthritis. But I am here. There is alot of good and bad reading about scleroderma on the websites. We are all at different stages and not all people who have sclero is the same. I hope that makes since. The best thing for you and your family is to read as much as you can about scleroderma and become advocate for your mom. Here on the site is alot of good information plus stories that we have written about our selves. Please read!!! Well take care of yourself as well as your parents. Sam

#4 LisaBulman


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,133 posts
  • Location:Massachusetts

Posted 31 March 2007 - 02:28 AM

Hi Hope,
Welcome to the Sclero Forums! I am so glad you have found us here but I am so sorry that your mom has been diagnosed with scleroderma. We are all very supportive here and always offerring an ear to listen.
It must be so hard knowing that your mom is sick and there is nothing you can do to make her better. If you offer her support, love and try to understand the challenges she will face, I am sure she will appreciate that. I know I do!
As for the time lines, well they went out the window a long time ago. Researchers are making strides everyday to help people with their symptoms and to be able to manage their disease.
Please know that we are all here for you!

Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#5 Margaret


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,014 posts
  • Location:Pennsylvania

Posted 31 March 2007 - 03:03 AM

Hi Hope ,

I just wanted to say 'hello' and welcome to the group. My situation is reversed from yours. I am the Mom and my son, who is an 18 years old senior, was diagnosed last fall with probable sine Scleroderma. I, too, was very depressed when reading all the reports on sclero but with all the new medical information and meds, etc., I am very optimistic about him having a fairly long life.
Take care, Everyone.

#6 Heidi


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 571 posts

Posted 31 March 2007 - 04:53 AM

Hi Hope,

Welcome to the forums! I am glad you have found us but so sorry it is because your mom has scleroderma. As everyone else has said, it is absolutely ridiculous to put a time-line on your mother's life expectancy. Everyone with this disease has a different course and NO ONE can predict what this disease will do in any one person or how that person may or may not respond to all the different treatments out there for the different symptoms. There are many, many members on this board who have struggled with Scleroderma for many years (more then 10)!

I agree that the best way to help your mother is to become informed about the disease and the treatments currently available for the different symptoms. I don't know if you have read much yet, but we have wonderful information on our Sclero A to Z website. I hope you read the information here as I think you will find it very helpful.

Again welcome!

Warm wishes,

#7 susie54


    Silver Member

  • Members
  • PipPipPipPip
  • 259 posts

Posted 31 March 2007 - 06:11 AM


I am a mother with a loving daughter who was about the same age as you are when I was got sick ,diagnosed later. The first few years were sooo rough but with proper treatment and good doctors, your mother can have many more years than what the doctor said. I hope to live a full life and yes, I have to deal with the ups and downs and yes, it will progress but it can slow way down. I am about to be a grandmother and I am planning to see my grandchild grow up.My daughter and I are very close and this support is the main thing that gets me through all of this. I am doing better now than I was back in the beginning. Call it good management or whatever but talk to your mother about this. She would appreciate it. Susie54

#8 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 31 March 2007 - 08:22 AM

Hi Hope,

Welcome to the Sclero Forums. I'm sure sorry you found us due to your mom being ill. I felt the same way you did when I was first diagnosed. I have children, and grandchildren and all I could think about was how are they going to do when I'm gone. I was diagnosed 7 years ago and I'm still kicking and don't have any plans to die anytime soon.

The info your mothers doctor gave is so old school. There are people that live a ripe old age despite having sclero. I see that Heidi gave you a link to review, look around and if you have specific questions throw them out to us and we'll help you work through them.

There is HOPE! Don't throw in the towel yet and hopefully you can share information that you get here with your mom and dad.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#9 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 31 March 2007 - 10:30 AM

Dearest Hope,
Welcome to this wonderfully, supportive place! I'm so glad that you have joined us and have shared some of your story. I have to support everything that has been said thus far. Scleroderma is NOT a death sentence by any means. There are so many new treatments out there that it's hard to believe that a doctor today would say such a thing! Many of the people of this forum have had systemic scleroderma for well over ten years. I'm in year 5 and plan to be around a very, very long time.

I would really like to recommend that your mother see another rheumatologist, and if possible, a scleroderma specialist. I know she would not hear such a thing from a specialist and he would be able to treat her with a more positive attitude. Which, by the way is very important. You and your whole family need a very positive attitude about this. Life goes on and on and on and on - even if you have scleroderma! smile.gif

Just out of curiosity - what are your mother's current symptoms and involvement?

Again - we're very glad you are here and hope that we can help both you and your mother.

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 WestCoast1


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 553 posts

Posted 31 March 2007 - 04:22 PM

Welcome Hope,
i hope that you find lots of support here and with your doctors.



#11 americanmike


    Senior Bronze Member

  • Members
  • PipPipPip
  • 72 posts

Posted 31 March 2007 - 04:45 PM

Hi Hope--

1) the doctor is flat out wrong.
2) there are people being cured of scleroderma today after stem cell transplantation.
3) there is a significant amount of new treatments that stop progression or improve symptoms dramatically.
4) Each month new progress is made in understanding, treatment, medications and everything surrounding this disease. EVERY MONTH!!!!
5) In 6 more years you can expect many more options that would improve her chances.

I''m truly sorry about this disease you mother has and how you are taking it. It's no fun. But... there is hope. There is a reason to seek expert medical care. There is good reason to read up. It's not good for you to think of her as "doomed" she is not doomed. Of course it's a serious disease and some people will die after however many years. But it's treatable, sometimes curable, and worth fighting.

I agree with Janey! Get her to an expert ASAP and start day 1 of her fight back!!

Michael in Florida

#12 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 01 April 2007 - 12:10 PM

Hi Hope,
I am so very glad you came here... for at least support from those of us who know very well about Scleroderma. Many of us learned via this very support group... after all "knowledge is power".
I am not your age either, but I want to let you know that you sound like a very loving daughter and your mom is fortunate to have you. I hope that you can become less scared.the more you learn about your mom's illness. BTW, maybe you can help her with what you learn!
Take care and please...don't be a stranger.
Hugs,, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#13 emmie


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 319 posts

Posted 01 April 2007 - 04:49 PM

Hi dear,

I have daughters older than you. They both fuss over me from time to time, but as time goes on, we actually find more to laugh about than fuss about.

What I mainly want to say to you is that your beautiful name, Hope, says it all. I think your mother knew what she was doing when she named you that.

She may have days when she's tired, or achey, or whatever depending on who, what, where the scleroderma is...Just always remember your name!

xoxo emmie

#14 ShawMJ


    Senior Bronze Member

  • Members
  • PipPipPip
  • 70 posts

Posted 01 April 2007 - 06:06 PM

Hope,I'm going to join the rest in telling you that the timeline is so OUTDATED,why if that was the case I'd be gone this year as I have had scleroderma for 10 years now and I am still very much here and plan to be for a lot more.I have 2 daughters older than you but ten years ago when I was diagnosed they got online and found out all they could about this disease so did my two sons.I have a very loving husband and children and grandchildren and I of course have my bad days and not so bad days but I take them one at a time and do what I can do and have quit worrying about what I can not do.Your mom is lucky to have a caring daughter like you and your dad too.Read all the links that Heidi and the rest of the group gave you they're packed with lots of good information! And do come here as often as you need to,as you will find that we all understand what you're going through and can maybe help.Please don't worry about the time they gave yu that was really wrong of them.Keep your chin up and my favorite saying is ----Smile. Mary-La.

#15 monika


    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 03 April 2007 - 01:14 PM

Hi Hope

I'm sorry to hear that your Mom has been diagnose with Scl. Well I'm 34 and was diagnosed when I was 32, I don't have children yet. All the literature you read is quite depressing, but then when you get a good specialist who knows their stuff, the realistic picture is on a brighter note. 10 years? I'm a fighter and I plan on being around a lot longer than that. Yes you have good and bad days, but you have to keep positive, and I think be open to many different ideas and theories.

I'm with the others, I'd be looking for another specialist - one who is positive. This forum is wonderful and you'll find it has a wealth of information and support.

Keep your hope up.