Julie Hughes HSCT for MS

First post: Sep 29, 2020 Latest post: Oct 22, 2021
Thanks for visiting my CaringBridge site!

To get you up to date…The bad news: I was diagnosed with multiple sclerosis (MS) a little over a year ago, and I’ve unfortunately had some loss of function in all four of my limbs, despite being on the best MS drug.

The good news: I received approval to get a hematopoietic stem cell transplant (HSCT) at the Cleveland Clinic for my MS.

HSCT is a procedure that will “reboot” my immune system through high dose chemotherapy to destroy my old immune system, followed by reintroduction of my own bone marrow stem cells to rebuild it. The goal of HSCT is to leave me with an immune system that no longer has MS. 

The procedure is grueling and has serious risks, but research studies have shown it’s the only treatment that can arrest progression of MS. Despite the risks, I am very excited to receive this treatment. This past year, I have watched my physical abilities erode as my disease has relentlessly progressed. For those of you who don’t know me well, most of my hobbies have been centered around often unconventional physical activities, including juggling machetes and flaming torches, collegiate rowing, robot-ing as a mascot for the Minnesota Rollergirls, and more recently, choosing among tapping, snapping, or napping in the wonderful martial art of Brazilian Jiu Jitsu. I am optimistic that this treatment will allow me to get back to my old self.

So, I’m heading to Ohio to receive world-class healthcare. I expect to be in Cleveland for about three months. If you  would like to learn more about the treatment, you can do so here: https://www.nationalmssociety.org/Research/Research-News-Progress/Stem-Cells-in-MS/Bone-Marrow-Stem-Cell-Transplant-–-HSCT

I look forward to having you with me on this journey. Thanks so much for your support. I can't wait until I have a new immune system, hopefully free of MS, so I can get back to great times with all of you.