Waiting for that trial wasn’t going to be good enough for me. By September of 2019, I needed a cane to walk every day and had to use a brace to do a slow jog-walk. We left it at that.Īs the months passed, I began to lose my ability to run. He told me there were clinics opening as a part of the BEAT-MS trial, and he’d let me know when they were available. Stopping something that was going to drive me into a wheelchair had to be better than slowing it down.Īt my next appointment, I asked my doctor about HSCT. This was when I started to realize what it meant for me that my medication was designed to slow the progression of MS-but it wasn’t going to stop it. I could feel everything-the foot drops, tingling, and sharp pains zipping down the front of my body. But the “crap gap,” or a very brief period of time when the medication started to wear off before the next infusion, was tough. Getting the IV drip every six months didn’t bother me. I was taking the only FDA-approved medication available for people with PPMS. At the time, I didn’t know a lot about the disease I was living with and just did whatever my doctors told me to do. When we returned to the U.S., I decided to keep researching my options. Sagirah with her daughter, Anastaszja, and husband, Joe. I had some numbness, my foot dragged a little (a symptom known as “foot drop”), and sometimes I had tremors. Emerging studies suggest that, for some people, it seems to work.Īt first, I assumed an intensive treatment like this didn’t really apply to me yet. The goal’s to stop MS at the source in the hopes that your body’s new immune system will no longer attack your nervous system. I’d never heard of it.Īs I learned, HSCT (which stands for hematopoietic stem cell transplant) is a procedure designed to “reset” your immune system using chemotherapy to wipe it out and your own stem cells to rebuild it from scratch. They matter-of-factly mentioned HSCT as a potential treatment option. I looked at my husband and he was like, "Of course there’d be a race." I knew I had to sign up.Īfter I picked up my race packet, I began flipping through a magazine with information on MS treatment. was having a race for MS awareness that weekend. The moment we landed, we saw that the U.K. It was on a personal trip to Ireland with my husband in April 2019 that I discovered a promising experimental treatment for MS still under investigation in the United States. I made a vow to tackle my bucket list right away, most of which involved travel. At 29, I had a lot of things to do, and I wasn’t sure where this whole MS thing was going to fit into my life. I thought about my husband, Joe, our 10-year-old daughter, Ana. It was a relief to get a diagnosis, but I struggled to understand how I could go from training for a marathon to being told I’d be wheelchair-dependent within five years. In turn, we tend to have a harder time with walking and everyday activities. After a lot of tests, I was diagnosed with primary progressive multiple sclerosis (PPMS), a form of MS that causes a slow-and-steady decline in your ability to function due to damage from a haywire immune system’s attacks on myelin (protective nerve cells).Ĭompared to relapsing forms of MS-which are more likely to attack the brain-people with PPMS primarily experience assaults on their spinal cord. Back at home in Houston, I went to a sports physician thinking my problems had to be running-related. I knew something was wrong and I had to listen to my body, but that meant I wasn’t going to be able to get the special moment I’d envisioned for so long.Īs city crews cleared the streets, I walked to the finish line to receive my participation medal. I’d trained for months and had run half-marathons before, so I couldn’t understand what was stopping me. By mile 13, I was in a medical tent trying to figure out what was going on with me. I couldn’t pick up my feet the way I normally would. But as I racked up miles, I started to feel.weird. All of my friends and family were there at the Chicago Marathon to cheer me on. October 2017 was supposed to mark the culmination of my efforts to quit smoking and start running after my father passed away.
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