1. < Kidney & Bladder

Scleroderma and FSGS Kidney Disease

Posted by rconnell22 @rconnell22, Apr 19, 2018

I would like to hear from anyone who has been diagnosed with both of these. Being told they are not correlated and doctor's are stumped.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

rconnell22 | @rconnell22 | May 3, 2018
In reply to @kanaazpereira "Hello @rconnell22, My sincere apologies for the tardy response, but I'd like to extend a warm..." + (show)
@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

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Hi
Thank you for sharing your story. We have a really good Nephrologist who has been aligning all of the specialists and she has been a big advocate for us so far. We are trying to get a meet set up with some stem cell doctor's at Northwestern and if it falls through our next step is to try to set something up at Mayo. Right now we are in this spot where medications and treatments aren't working and we need to look at something new or different to try. We have been heard the term 'medical mystery' more then I can remember. We are also trying to get a full gene study done peding insurance approvals.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 3, 2018
In reply to @kanaazpereira "Hello @rconnell22, My sincere apologies for the tardy response, but I'd like to extend a warm..." + (show)
@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

@rconnell22, It sounds like you and your doctors do have a plan for some next steps. I hope that that you and they will learn something that will lead to a manageable treatment for you.
We will continue to watch, with you, for other members to share their experiences with Scleroderma and FSGS Kidney Disease.
Keep in touch, and let us know what you learn.
Rosemary

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