Tag Archives: treatment

Disability, HSCT, Medications

Trying to save another life

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I know so many people with Multiple Sclerosis (too many, in fact) which is why I strongly advocate for HSCT (Hematopoietic Stem Cell Transplantation). I believe that HSCT should be a treatment option that is available to those who qualify for it, especially if the MS medications have failed them, and that insurance helps to pay for it.

My good friend, Katie Hominsky, who was actually a former patient of mine is now hoping to get her treatment at Northwestern in Chicago, like I did nearly 2 years ago. I and several other ladies who live within a few minutes of me, who have had the treatment have been campaigning on her behalf to help her get donations so she can receive this treatment.

We are trying to save her life.

It’s that simple.

And now we are finally being heard! The Medina Gazette has a story on her and tells her journey how medications have failed her and that she NEEDS this treatment ASAP.

http://www.medina-gazette.com/Medina/2018/11/16/Medina-woman-hoping-stem-cells.html

Please read about my wonderful friend who needs our help.

We love you Katie and we are praying for you!

HSCT

Walking after 10 Years Thanks to HSCT for MS (BBC’s Story)

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I wanted to share The BBC’s amazing story of Roy Palmer, who after having HSCT treatment in Sheffield, England, is now walking (and dancing) after being confined to his wheelchair for ten years due to his Multiple Sclerosis.

Walking again after ten years with MS

Many people have been messaging me these past few days with his story, asking me if this is the same treatment that I had done.

It is indeed the same treatment!

I was blessed to receive HSCT in Chicago at Northwestern with Dr. Richard Burt. Both Chicago, Illinois and Sheffield, England were part of the Multi-center Phase 3 Clinical Trial that provided this treatment to people with Relapse Remitting Multiple Sclerosis. This treatment has been truly life-changing for me, as it has been for Mr. Palmer; as well as hundreds more of us who have received this treatment.

Please feel free to comment or send me any questions to my email anna@endmyms.com and I will do my best to answer them or steer you in a direction to where you can go for more information. Thank you to everyone who has been following my journey here on my blog. Thank you to those who believed in me, helped me on my journey, and believed in this treatment. I am feeling incredible and am running and dancing around again just like Mr. Palmer. HSCT is finally getting the much deserved recognition that it deserves. My wish and prayer is that everyone for whom this treatment may help is able to have the option to receive it someday. The sooner the better! Many don’t have time to wait and are out of options. There is hope in HSCT for many.

HSCT

HSCT for Relapse Remitting Multiple Sclerosis – Phase 3 Clinical Trial

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Here is the direct link from ClinicalTrials.gov to (MOST) – Maximizing Outcome of Multiple Sclerosis Transplantation.
This is the study, run by Dr. Richard Burt, that is currently recruiting people ages 18-58 with RRMS (Relapse Remitting Multiple Sclerosis) at Northwestern in Chicago, Illinois.
You will be able to see and read about all the criteria necessary to apply to the study as well as the protocol and contact information.

https://clinicaltrials.gov/ct2/show/study/NCT03342638

Study Description

Brief Summary:
Multiple sclerosis (MS) is at onset an immune-mediated demyelinating disease. In most cases, it starts as a relapsing-remitting disease with distinct attacks and no symptoms between flares. Over years or decades, virtually all cases transition into a progressive disease in which insidious and slow neurologic deterioration occurs with or without acute flares. Relapsing-remitting disease is often responsive to immune suppressive or modulating therapies, while immune based therapies are generally ineffective in patients with a progressive clinical course. This clinical course and response to immune suppression, as well as neuropathology and neuroimaging studies, suggest that disease progression is associated with axonal atrophy. Disability correlates better with measures of axonal atrophy than immune mediated demyelination. Therefore, immune based therapies, in order to be effective, need to be started early in the disease course while MS is predominantly an immune-mediated and inflammatory disease. While current immune based therapies delay disability, no intervention has been proven to prevent progressive disability. The investigators propose a randomized study of autologous unmanipulated peripheral blood hematopoietic stem cell transplant (HSCT) comparing two different conditioning regimens: (1) cyclophosphamide and rabbit anti-thymoglobulin (rATG) versus (2) cyclophosphamide, rATG, and Intravenous Immunoglobulin (IVIg).