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Biomarker for Diffuse Scleroderma skin has been discovered!


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9 replies to this topic

#1 Sacha

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Posted 12 April 2011 - 03:18 PM

Hi guys,

It''s been a long while since I have been on here. Katie fell very ill in January of this year and ended up having a nasal gastric tube as her oesophagus was not working proprly. It had become dialated and her muscles weren't working properly.

After 10 weeks, she had the feeding tube out last Monday and after an increase in her methotrexate and prolonged steroids she is finely showing great improvement! I am actually getting my daughter back!

I know that we have to take it day by day but she is now eating most foods and her energy levels are fantastic!

I just wanted to share my news.

Sacha

#2 Sheryl

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Posted 12 April 2011 - 03:54 PM

Sacha, it is very hard when our children are ill. With this disease it sometimes becomes unbearable. I am glad your daughter is doing much better. Please keep us informed on her well being. Others with children with this illness like to stay up to date and informed on what is going on with other children. Happy news.
Strength and Warmth,
Sheryl

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#3 Joelf

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Posted 12 April 2011 - 04:05 PM

Hi Sacha,

What excellent news about your daughter, Katie; I'm so pleased to hear it!

It must be such a relief for you to know that things are gradually improving for her. :great:

Please do keep us updated on how she's getting on.

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#4 Snowbird

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Posted 12 April 2011 - 06:52 PM

Hi Sacha

I too am glad to hear she is doing so much better, that's such terrific news!
Sending good wishes your way!

#5 Margaret

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Posted 12 April 2011 - 07:32 PM

Hi Sacha ,

I took a deep breath on reading about Katie. I am glad to hear that she's doing better. :VeryHappy: My own son was diagnosed, at age 18, with the esophageal dismotility, but hasn't had to have a feeding tube. Please continue to keep us up to date on her health.

Take care, Everyone.
Margaret

#6 Jeannie McClelland

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Posted 12 April 2011 - 09:11 PM

Sacha, that is just great news. I hope she continues to improve in all areas. Are you taking care of yourself too?

Here's a couple of big hugs for you and Katie and my very best wishes. :emoticon-hug: :emoticon-hug:
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#7 debonair susie

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Posted 13 April 2011 - 04:35 PM

Hi Sacha!

I am so happy you shared this good news with us! :emoticons-group-hug: We ALWAYS love to read when things are working well for one of our own!

Please give Katie a Very Special :emoticon-hug: from all of us...and then ask if she would do the same back to you :thank-you-2:
Special Hugs,

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#8 Sacha

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Posted 14 April 2011 - 08:50 AM

Thankyou for all your best wishes. This site always gives me a warm glow. I'm lucky in the fact that Katie is upbeat and tends to take everything in her stride. But for me as a parent I just tend to hide away as I have done until everything is better.

Katie is having some more tests done in May to check out her oesophagus and how the muscles are working. Also checking the nerves as well. They told me when she fell ill in Jan that they had never seen an oesophagus like this in Scleroderma ( that might just be in a child). This comment didn't fill me with much hope but Katie is testament to the fact that things can get better.

Sacha.x

#9 susieq40

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Posted 15 April 2011 - 10:03 AM

Sacha,

So glad Katie is doing better!! It's so hard when your child is suffering
from such a horrible illness! :emoticons-line-dance:
:emoticons-group-hug:

Hope you are taking care of yourself also! HUGS

susieq40

#10 debonair susie

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Posted 15 April 2011 - 10:42 AM

Sacha, Katie obviously has GREAT will and that is quite excellent when dealing with what she/we do.

As for you, you deserve a great deal for your loving support of Katie!

Please keep us posted as to how her tests (in May)...go.

In the meantime, here are some loving :emoticon-hug: for you both.
Special Hugs,

Susie Kraft
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