Scleroderma update

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KrystalA
Posts: 522
Joined: Thu Jan 11, 2018 4:11 pm
Location: Arizona

Scleroderma update

Post by KrystalA » Tue Dec 03, 2019 12:52 am

Hey everyone,
First I want to share this bit of information since we have so many new members.

"Systemic sclerosis is a rare chronic disease of unknown cause characterized by diffuse fibrosis and vascular abnormalities in the skin, joints, and internal organs (especially the esophagus, lower GI tract, lungs, heart, and kidneys)." - www.merckmanuals.com

"Systemic scleroderma, or systemic sclerosis, is an autoimmune rheumatic disease characterised by excessive production and accumulation of collagen, called fibrosis, in the skin and internal organs and by injuries to small arteries. There are two major subgroups of systemic sclerosis based on the extent of skin involvement: limited and diffuse. The limited form affects areas below, but not above, the elbows and knees with or without involvement of the face. The diffuse form affects also the skin above the elbows and knees and can spread also to the torso. Visceral organs, including the kidneys, heart, lungs, and gastrointestinal tract can also be affected by the fibrotic process. Prognosis is determined by the form of the disease and the extent of visceral involvement. Patients with limited systemic sclerosis have a 10-year survival rate of 75%; less than 10% develop pulmonary arterial hypertension after 10 to 20 years. Patients with diffuse cutaneous systemic sclerosis have a 10-year survival rate of 55%. Death is most often caused by lung, heart, and kidney involvement. There is also a slight increase in the risk of cancer.[1]

I. Systemic scleroderma:
A. Other names
1. Diffuse scleroderma
2. systemic sclerosis

Clinical appearance of acrosclerotic piece-meal necrosis of the thumb in a patient with systemic sclerosis." - Wikipedia

As an update on me, in this past year alone my heart has gone from fine to now having calcium buildup and regurgitation in both heart valves. This puts me at a high risk for A-Fib and heart attacks. This puts my Ssc (Systemic Sclerosis/scleroderma) as an aggressive form. I found out 2 months ago that my time frame is around 10 years, if Ssc keeps progressing at this speed. So that is the new info. Anyone have questions or would like to know more about Ssc, please inbox me your personal email. I will send to you a PDF booklet for caregivers, family, and friends.

Krystal

girlzruleboyzdrool4u
Posts: 155
Joined: Sat Mar 02, 2019 4:58 pm

Re: Scleroderma update

Post by girlzruleboyzdrool4u » Tue Dec 03, 2019 1:04 am

This must be so scary for you. Big hugs and you're in my prayers .
I hope you'll be ok

KrystalA
Posts: 522
Joined: Thu Jan 11, 2018 4:11 pm
Location: Arizona

Re: Scleroderma update

Post by KrystalA » Tue Dec 03, 2019 1:45 am

Thanks girlsrules,
I am hanging in there. Actually, I am at complete peace. No fear at all. Frustration, yes lol oh boy, yes. Lol

Emily
Posts: 81
Joined: Fri Nov 08, 2019 3:49 am
Location: UK

Re: Scleroderma update

Post by Emily » Tue Dec 03, 2019 2:03 am

I'm glad you're at peace, Krystal, and I'll be keeping you in my thoughts and prayers.

KrystalA
Posts: 522
Joined: Thu Jan 11, 2018 4:11 pm
Location: Arizona

Re: Scleroderma update

Post by KrystalA » Tue Dec 03, 2019 4:27 pm

Thanks :) Appreciate that.

Kerry
Posts: 674
Joined: Wed Oct 04, 2017 11:54 pm

Re: Scleroderma update

Post by Kerry » Wed Dec 04, 2019 10:45 pm

Hi Krystal
I think I sent my email earlier this year but I’m horrible at checking it. Text me any time too.
Key

KrystalA
Posts: 522
Joined: Thu Jan 11, 2018 4:11 pm
Location: Arizona

Re: Scleroderma update

Post by KrystalA » Thu Dec 05, 2019 10:07 am

Kerry wrote:
Wed Dec 04, 2019 10:45 pm
Hi Krystal
I think I sent my email earlier this year but I’m horrible at checking it. Text me any time too.
Yes Kerry, you did. Thank you so much :)

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Clint
Posts: 245
Joined: Sat Feb 11, 2017 12:01 pm
Contact:

Re: Scleroderma update

Post by Clint » Thu Dec 05, 2019 10:42 am

Krystal, I appreciate you sharing your situation here and admire how you keep going. Nevertheless, one suggestion, this is the public section - do you want this to be there? Any Google bot can and will index it.
Clint from Domestic-Discipline.net
How do you like the web site ? If you have any ideas or wishes for future posts, don't hold back!

KrystalA
Posts: 522
Joined: Thu Jan 11, 2018 4:11 pm
Location: Arizona

Re: Scleroderma update

Post by KrystalA » Sun Dec 08, 2019 10:45 am

Clint wrote:
Thu Dec 05, 2019 10:42 am
Krystal, I appreciate you sharing your situation here and admire how you keep going. Nevertheless, one suggestion, this is the public section - do you want this to be there? Any Google bot can and will index it.
Yes, Clint it is fine :) I started a blog too just need to add more info to it and I'll share the link here too.

KrystalA
Posts: 522
Joined: Thu Jan 11, 2018 4:11 pm
Location: Arizona

Re: Scleroderma update

Post by KrystalA » Sun Dec 08, 2019 10:57 am

Not only has my weekend been filled with a nasty head cold, but my scleroderma has decided to attack my skin on my face. As you can see, the photo shows the skin being pulled tightly. Also, the darker pinkish spots under my one eye, on my nose, and around the eyebrows are the dry skin sores. These spots will leave scares on me.

When I get sick with head colds, flu, or other elements, my scleroderma attacks those areas faster. This is not for everyone as each scleroderma patient's body responds differently when he/she is sick.

Have questions, ask away :)
Attachments
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Skin being tightened
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