Nancy Furlow
Sutxwaan / Nancy J Furlow, PhD
I am an older Tlingit woman, living in a small island community in southeast Alaska. I receive health care at our local Indian Health Service (IHS) hospital which serves all of southeast Alaska. Our specialists though are at a larger IHS hospital in Anchorage, Alaska, a two-and-a-half hour flight away. I received my undergraduate degree from Smith College and my PhD in Native American Religious Traditions from the Univeristy of California Santa Barbara. I am now retired, but I served as faculty within the University of Alaska system where I taught Alaska Native Studies, was Interim Director of Alaska Native Studies, and served as Director of the National Resource Center for Alaska Native Elders. In that position I worked with tribes throughout Alaska to increase health and wellness for Alaska Native elders and increase access to health care. Also in that position we were able to work with the Alaska Department of Environmental Conservation to gain FDA approval for Alaska Native traditional foods to be offered in all public settings. These foods are primary sources of nourishment in communities where store bought groceries can cost exorbitant prices making them inaccessible. But traditional foods are also healthier for Alaska Native peoples. Presently, I have become an advocate and spokesperson for our missing and murdered indigenous men and boys alongside the efforts for missing and murdered women and girls, and however all our people identify gender-wise. I raised a grandson from birth as my only son and in 2017 he was brutally murdered in Anchorage, Alaska. His case is now a cold case, so I advocate for him and hope someday his murderers will be held accountable. But I am also passionate about teaching our health care professionals and others about MOGAD. I participate in services offered by the MOG Project and will begin to identify tribes that have someone diagnosed with MOGAD. I plan to begin working with tribes to alert them to rare neuroimmune diseases. As I began to have symptoms of MOGAD and began going to the emergency room in Sitka, I was labeled as “making up” my symptoms. I want to ensure this does not happen in our IHS hospitals and healthcare facilities when a patient comes in with unusual symptoms. Additionally, I currently serve on the UCB MOGAD Global Patient Council.
In late 2021 I had an attack of ON and then three weeks later had increased muscle loss and intense nerve sensations, although at the time I didn’t know what was happening within my body. I was medivaced from Sitka, Alaska, where I live to, Anchorage to have access to neurologists and a higher level of medical care. Fortunately, one neurologist had previously worked with MOG patients and recognized my symptoms. Before I could be treated though, all infectious diseases, all cancers, and MS and related MS diseases had to be ruled out. As we waited for those tests results to come back I became paralyzed in my lower body, had full paralysis of my bladder, and muscle weakness in my upper body. MRI’s showed lesions in my spinal cord, brain stem, brain, and right optic nerve. All this was happening at the height of the Covid Omicron virus circulating, so there was a delay in getting a diagnosis of MOGAD from the Mayo Clinic. Because of this delay as soon as everything else was ruled out I was put on five days of high doses of IV steroids, the standard treatment for acute MOGAD attacks. Fortunately within a few days the paralysis and ON began to subside and my eye sight stabilized. I was quickly moved out of the hospital to a private patient housing room in order to decrease my chances of contracting covid. I remained in the private room for over 2 months before I could finally go home. I’ve remained on oral steroids, but the dose is slowly being decreased since I relapse with changes in my prednisone levels. In June of 2022 I was able to begin IVIG infusions after a study was published that showed the effectiveness of IVIG in adults with MOG. Since Indian Health Service providers can only prescribe FDA approved medications for diseases, this study made it possible for me to have IVIG infusions. Even though these infusions are helping me gain more physical and mental abilities, it’s taken months to manage the side effects. I am also still working towards stability with MOG and even a few weeks ago had a relapse and was hospitalized for a few days. With the assistance of my MOG Team, a small group consisting of my daughter and close friends, I am able to manage relapses or pseudo-relapses. This is especially important since I live alone. I also lose my ability to make good decisions when I am relapsing and knowing they have my back when I can’t think clearly is essential for me to confidently manage my life with MOG.
