Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Friend Diagnosed With Scleroderma


  • Please log in to reply
10 replies to this topic

#1 rache

rache

    Newbie

  • Members
  • Pip
  • 3 posts
  • Location:Indiana

Posted 04 August 2007 - 08:04 AM

Hello!
One of my best friends has recently been diagnosed with diffuse scleroderma. She is 35 years old, single with no kids, and has always been extremely independent. She moved from Indiana to Florida several years ago to start a "new" life. Since the diagnosis, she has realized that she is unable to live on her own anymore and is moving back to live with her parents.

I am deeply troubled for her....wondering what the future holds.......what can I do to help?? ....worried about what I do or say...........

I was excited to see this forum and read through it. I sit here crying for others with the same diagnosis and wondering what will come for my friend. I am amazed by her humore through this, which I hope will be half the battle. What can you recommend for me to support her?

I wish you all the best!
Rachael

#2 scampie5

scampie5

    Silver Member

  • Members
  • PipPipPipPip
  • 158 posts

Posted 04 August 2007 - 08:50 AM

Hi Racheal so sorry to hear about your friend having diffuse , I have Crest and Diffuse and at the moment manage ok can your friend get on this site as it may also help her answer any problems she is having , or put her in the right direction I have to say that having a good humor does help , you can support her by just being there for her and for you to also have some knowledge of this condition so you can fully understand what she is going through not easy I know but when I was diagnosed I decided that I have it and there is nothing I can do about it so I make the best of every thing with a very supportive husband my love to you both Lynn

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 04 August 2007 - 09:10 AM

Hi Rachael,

Welcome to the Sclero Forums and how sweet of you to care enough about your friend to even ask. Knowledge of the disease, and being the caring, understanding friend that you are is what you can do for her. Here is a link to get you started so you can learn a bit more about scleroderma, to help you understand what she is going through.

As time goes by, and you have more questions, just ask away and we'll try to be here for you and her. If you can encourage her to visit our site as well.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 rache

rache

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 3 posts
  • Location:Indiana

Posted 04 August 2007 - 09:13 AM

Thank you so much for the kind words.....

I think that it is really just starting to sink in for my friend. She gave up her apartment and is driving from Fla to Indiana with another friend today.

She has an appointment at the end of this week with a specialist. I thought I would give her some time to get everything in line and introduce her to the website.
She was working as a manager at a restaurant, but had to give it up due to lethargy and risks of injury her hands. It seems like everything is happening very quickly. Is this normal? She has great difficulties moving her fingers, c/o itching, joint pain and being tired. It all started in October. It has been a life-changing ordeal........as I am sure everyone reading this can sympathize.
1) the diagnosis
2) finances
3)needing to move in with parents
4) worry about the future
She is going to a physician in Indianapolis, In. Anyone aware of specialists in this state?
Thanks so much

#5 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 04 August 2007 - 09:18 AM

Hi Rachael,

The progression of the disease is different for everyone. The best thing she could do is see a specialist right away and go from there. I found an expert in Indiana, here is the info.

Indiana:
Institution: University of Indiana School of Medicine
1110 W. Michigan Street, LO 545
Indianapolis, IN 46202-5100

Coordinating Investigator: Rafael G. Grau, MD

Telephone Number: (317) 274-7792

I hope this helps!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 04 August 2007 - 10:44 AM

Hello Rachael~
I think that you are already a wonderful friend by learning about her illness and what she is going through. You are right about her humor making each day more bareable. It is SO great to have someone in your life who really wants to hear how you are doing....illness and all.

We all just want to live normal lives and be healthy, so the best thing a friend could do is to always be there, listen when we need to vent, or cry and be ready to laugh and have fun when we are feeling up to it.

Please feel free to ask lots of questions. I am glad that you found the Forums.
*WestCoast*

********

#7 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 04 August 2007 - 04:42 PM

Rachael,
What a super friend you are! Welcome to the forum. You have come to the right place for support and information. I hope once your friend has settled into her home that you will be able to encourage her to come to this site. My best friend has had a very hard time dealing with my diagnosis of scleroderma. I have CREST/limited scleroderma. As Sweet says scleroderma affects each of us in a different way. Take care of yourself and keep on supporting your friend! :D
Nan

#8 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 04 August 2007 - 08:34 PM

Welcome to the ISN Sclero Forums, Rachael. As you are finding, this is a great place for information and support. Your friend is lucky to have you so willing to help in the ways you can. I hope she will be able to join us once she gets settled. Hugs to both of you.
Warm wishes,
Jefa

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

International Scleroderma Network (ISN)

#9 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 05 August 2007 - 02:15 AM

Welcome Rachel!

Youa re already doing a ton by joining this site and getting information. One of the hardest things for people who are diagnosed with this is that their friends and family don't want to know anything about it and treat us like we are fine. Many of us have lost friends because they don't know how to deal with the disease or don't want to. Your friend will have days when she has a ton of energy and it seems like she'll never stop, but on other days it will take every bit of energy she has to get out of bed.

If you are knowledgeable, supportive and caring it will go a long way in helping her deal.

Here is a great story you can share with your friend: The spoon theory

Hugs,
Lisa
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)

#10 dawn

dawn

    Bronze Member

  • Members
  • PipPip
  • 10 posts
  • Location:florida

Posted 07 August 2007 - 06:15 AM

Lisa-
This was the first time I have heard of the spoon theory... it is a great discription. My 10 yo also has limited number of available spoons (energy) for the day. She can borrow from the next day but then the next day is shot. I am going to print it out. It is wonderfully written and unfortunately so true for some.

:D dawn

#11 dawn

dawn

    Bronze Member

  • Members
  • PipPip
  • 10 posts
  • Location:florida

Posted 07 August 2007 - 08:32 AM

Rachel,
There isn't a right answer or right thing to say or do for your friend... just being there, being available, being a friend is enough. As a friend, a parent, a spouse, a caregiver you feel helpless. Sometimes when we are having a bad day, my daughter will comment her life is harder than her friends. Things are tougher for her, and I tell her she is right. I hug her tight and cry with her. It seems just having someone confirm that life isn't fair is all she needs. Then the next second she is up and running around playing.

Her best friend since Kindergarten sometimes comes over to read her a book, watch TV, or if she is in the hospital she will come over and just be there. Pushing all the buttons to the bed and calling the nurses for their hundredth popcycle... And then they just laugh, and laugh.

Hope this helps in some small way.
:D Dawn