Scleroderma: How can I help my sister?

Posted by aep57 @aep57, Nov 12, 2022

My sister in Northfield, MN was diagnosed with Sclaroderma approx 6 months ago.
It has progressively gotten worse.
I am in MI but am traveling there soon and wondering if taking her to Mayo in Rochester to be evaluated may be an option.
Been reading about stem cell/bone marrow transplants.
I have stem cells that have been frozen from birth of last baby.
Looking for hope. She is very sick. 😥

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@aep57 I am so sorry to hear that your sister has scleroderma. But she has you looking out for her! Yes, Mayo in Rochester is always an option, but it can be difficult to get in to. Firstly, you may want to try comprehensive medical centers or university teaching hospitals in her area. You can also try Mayo Clinic Care Network which are hospitals that work with Mayo Clinic. https://mayoclinic.org/about-mayo-clinic/care-network/members.
There is also a previous discussion that you may find helpful:
https://connect.mayoclinic.org/comment/649146/
Will you come back and let me know what you learn?

REPLY

Hello @aep57 What a beautiful photo of your sweet sister. I’m so sorry she’s going through such an awful time with scleroderma. Is she under any current treatments such as Cellcept?

You may have already researched some of these discussions where other members who have scleroderma, but I wanted to bring them to your attention just in case you haven’t:
– Scleroderma, Limited https://connect.mayoclinic.org/discussion/scleroderma-limited/

– Video Q&A about Scleroderma https://connect.mayoclinic.org/event/video-qa-about-scleroderma

Here is the Mayo Clinic informational article on Scleroderma.
https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952
A stem cell transplant can potentially be an option to reverse the autoimmune reaction from this disease. It would give your sister a new immune system, though the transplant can come with its own set of issues. Often siblings are a good match for bone marrow transplants but there is detailed testing required to determine a match for transplant. The cells that you have frozen most likely would not be used for your sister. But if you match biomarkers, you may be asked to donate fresh stem cells for her.

Your idea to have her be seen at Mayo is the best! I had my bone marrow transplant there and I can tell you, Mayo is a place of hope! So I encourage you to request an appointment.

Here is the link to get you started.
http://mayocl.in/1mtmR63
You’ll see phone numbers for the Mayo campus in Rochester. Just give the number a call and the coordinator at the desk will take all of your information and get the ball rolling.

Let me know what you find out, ok?

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@becsbuddy

@aep57 I am so sorry to hear that your sister has scleroderma. But she has you looking out for her! Yes, Mayo in Rochester is always an option, but it can be difficult to get in to. Firstly, you may want to try comprehensive medical centers or university teaching hospitals in her area. You can also try Mayo Clinic Care Network which are hospitals that work with Mayo Clinic. https://mayoclinic.org/about-mayo-clinic/care-network/members.
There is also a previous discussion that you may find helpful:
https://connect.mayoclinic.org/comment/649146/
Will you come back and let me know what you learn?

Jump to this post

Thankyou so much for the information.
I will know better what treatment she has had thus far when I get there.
I would be happy to be a donor for her.
Will definitely be looking into this.
Thanks again and God Bless you! ❤

REPLY
@becsbuddy

@aep57 I am so sorry to hear that your sister has scleroderma. But she has you looking out for her! Yes, Mayo in Rochester is always an option, but it can be difficult to get in to. Firstly, you may want to try comprehensive medical centers or university teaching hospitals in her area. You can also try Mayo Clinic Care Network which are hospitals that work with Mayo Clinic. https://mayoclinic.org/about-mayo-clinic/care-network/members.
There is also a previous discussion that you may find helpful:
https://connect.mayoclinic.org/comment/649146/
Will you come back and let me know what you learn?

Jump to this post

Thank you for the links. I will be checking into them and gathering as much information as I possibly can.
Hopefully, it isn't too late to help change things in a better direction.

REPLY
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