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Biomarker for Diffuse Scleroderma skin has been discovered!


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Funding Came Through


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#1 Denelle

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Posted 18 December 2007 - 07:11 AM

Hello,

I got word today that I have funding to get a stem cell transplant!!!! Yeah!!!!! :lol: I have been waiting for almost a year. I am so excited!!!!!!!!!!!!!!!!!!!!

I don't have a lot of details yet, but am thrilled to the gills!!!!

Denelle in MN soon to be temporarily living in Chicago... and becoming bald. But it's worth it!

#2 Sweet

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Posted 18 December 2007 - 07:57 AM

Oh that is so great!!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Michelle2

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Posted 18 December 2007 - 08:14 AM

Great news! Congrats YAY!!!
Take care and stay warm,

Michelle

#4 Peggy

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Posted 18 December 2007 - 11:08 AM

YIPPEEE!!!!!!!!!!!! CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!

I am so very, very happy for you and so excited for you!!!!!

Warm hugs from Minnesota,
Peggy

#5 peanut

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Posted 18 December 2007 - 12:07 PM

I am so trilled for you. Bring a hat for your baldy head.
Will you be staying at the Seneca?
Are you getting the allogeneic (sibling) or the autologous (your own) stem cell transplant?

Also soon to be a transplantee - HOPEFULLY,
peanut

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

#6 Snowbird

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Posted 18 December 2007 - 12:16 PM

I'm excited for you too...that's wonderful exciting news!! Wishing you the best!

Ramona
Sending good wishes your way!

#7 Shelley Ensz

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Posted 18 December 2007 - 03:50 PM

Major congratulations, Denelle!!! And my best wishes as you go through the stem cell process.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 emmie

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Posted 18 December 2007 - 06:35 PM

Fantastic news, Denelle. Peanut is right--bring your hat, warm gloves AND mittens, warm socks...warm everything!!

I'm really happy for you. As I told Peanut, a woman I know had her transplant at NW. She is doing great now. Keep us posted.

All the best to you,

emmie

#9 Sam

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Posted 19 December 2007 - 04:26 AM

Denelle, That is awesome!!! Good luck with everything we will be thinking of you. Let us know when this is going to happen. sam,
Sam

#10 Margaret

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Posted 19 December 2007 - 06:49 AM

Denelle and Peanut ,

I am so happy for both of you and will keep you in our thoughts. I am still amazed at the progression of disease in one person versus another and I'm
very thankful that the Plaquenil works for Gareth.

Take care, Everyone.
Margaret

#11 epasen

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Posted 19 December 2007 - 07:30 AM

Great news, I'm so happy for you :)
Emmi

#12 Denelle

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Posted 19 December 2007 - 10:39 AM

Hi y'all,

Thanks for all the warm thoughts. I will be getting an autologous stem cell txc. I have been waiting about a year - so this is like an early holiday present biggrin.gif .

I did PFT's today and they are the lowest ever - it is about 1 year since I stopped taking cyclophosphamide - so I relapsed. I am very glad to be getting this transplant and even a bald head doesn't scare me.

I will keep you all posted as I go through the process.

Denelle In MN cool.gif



#13 Snowbird

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Posted 19 December 2007 - 02:05 PM

Hi

Humnn...I have to ask because I do not know anything about these stem cell transplants and would appreciate understanding them better. How is it that you can use your own stem cells (ie, are they not part of our problem entwined with Scleroderma)? I guess I'm just trying to figure out how our own cells can help vs a siblings healthier cells....unless our stem cells are healthy/not affected and are not part of our health problem? Can anyone explain that to me please?

Thanks, Ramona
Sending good wishes your way!

#14 Clementine

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Posted 19 December 2007 - 05:43 PM

Denelle,
This is HUGE! You can do it! I'm with you about the hair. Do you remember Melissa Ethridge when she was bald? It was fantastic and very empowering.
Just stay warm. I hope all the best for you.
xo,
Tangelo

#15 Clementine

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Posted 19 December 2007 - 05:45 PM

PS: How were your pfts? Number wise...
Tangelo

#16 peanut

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Posted 19 December 2007 - 07:29 PM

Ramona,
The stem cell transplant will allow her to restart her immune system by essentially giving her a new one. The hospital will give her a medication that will cause her bone marrow to produce baby infant stem cells, which are cells that haven't decided what they're going to be. It's so fascinating - the whole body is made of stem cells. Then, they will remove her stem cells and clean them removing anything the doctors’ think contribute to scleroderma. Chemo and immunosuppressants are given to kill the "broken" immune system then the new cleaned stem cells are given.

Sibling vs. one's own stem cells?? Well that's one the doctors are trying to figure out right now. A sibling transplant is more expensive and has a slight chance of rejection - for only 6 months. Also your siblings have a 1 in 4 chance of being a match.

It's a very interesting process. Hopefully this research will provide answers for us.

hope & health,
peanut

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

#17 Snowbird

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Posted 20 December 2007 - 02:59 PM

Hi Peanut

Thank you for the update, I had no clue....it really is interesting and certainly sounds promising for research, etc. I wish you so much luck with this!!! Ramona
Sending good wishes your way!

#18 janey

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Posted 20 December 2007 - 04:39 PM

Ramona,
Peanut gave you a great explanation of stem cells.

Stem cells are "blank cells that do not yet have a specific function. Under proper conditions, stem cells begin to develop into specialized tissues and organs.

About Stem Cells and Stem Transplants ISN The Q&A article is very interesting.
It's all very interesting

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)

#19 kellyA

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Posted 04 January 2008 - 01:33 PM

Congrats, where are you having this done, northwestern University? There was an article in a popular magazine about a woman who had the transplant -- she is doing fine today.

#20 bmw

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Posted 04 January 2008 - 02:58 PM

Best of luck you are in our thoughts
BMW