Shara’s Story
2020 WALK TO CURE ARTHRITIS HONOREE
I am 47 years old and have Juvenile Rheumatoid Arthritis (JRA), which I have dealt with most of my life. I was diagnosed at 8-years-old but displayed symptoms since I was 15-months-old. It affects all my joints, organs, and immune system. Even though I am an adult my arthritis is classified as Juvenile Rheumatoid Arthritis because the onset was when I was a child. (When I was a child they did not look to Arthritis as being a childhood disease.) Little did they know children can get arthritis, too. Then when I was 39, I was diagnosed with aplastic anemia, a rare life-threatening bone marrow failure and blood disorder where the body doesn’t produce enough red blood cells, white blood cells or platelets - making the body more susceptible to infections and internal bleeding. Only 600-900 people in the US are diagnosed with aplastic anemia each year and of those only 20 percent survive past 18 months. I may have been genetically predisposed to get aplastic anemia at that time in my life or I got it from a weakened immune system or side effects of the medicines I was on to treat my arthritis or I’ll never know. Regardless, my body has been through a lot over the years - trying out different medicines, treatments and having surgeries to treat and minimize the effects of my arthritis.
So much has changed since I was diagnosed with arthritis due to research, including new treatments and services supported by the Arthritis Foundation. I was always able to work with my arthritis even with my limitations. I got my bachelor’s degree in communications and PR from UNO and worked for Baker’s Supermarkets in Corporate Communications, traveled for work managing marketing and PR for Sprint-Nextel in the Midwest and handled sales for Omaha Steaks.
Then, when I was diagnosed with aplastic anemia it was a whole new ball game. I was immediately placed in the hospital in isolation because my white blood cell counts were so low (and you need white blood cells to help fight infections). And I am a social person. Because my white blood cell counts were so low, I got pneumonia and a fungal infection and had to have part of my right lung removed. I made it through the surgery but was placed on a ventilator for about two weeks. I was hospitalized for four months solid without leaving and had to go through physical therapy to learn to walk again from being bed-ridden. Since my white blood cell counts were so low, I was getting numerous infections and I was surviving off of regular blood and platelet transfusions. I was too sick for a bone marrow transplant, so my doctors considered placing me in palliative care and hospice. But my doctors weren’t ready to give up on me, and worked with my insurance and the National Institutes of Health to place me on an experimental medicine - Promacta, which helped to minimize my infections and gave my body a chance to rebound and my doctors a chance to try another round of treatment. I did not even receive the full treatment because I got too sick during the treatment but for some reason, kind of like the start of an engine turning over, it was enough to jump-start my bone marrow. Then, my white blood cells started to increase and for the first-time in 16-months I did not have to wear a mask and I was getting less blood and platelet transfusions - giving me a new lease on life. I could go out in public again.
Growing up with arthritis, I became involved with the Arthritis Foundation in high school and college, having served as a United Way/CHAD poster-person, a speaker at Omaha and Lincoln Women of the Year Galas, Arthritis Foundation local and national telethons, CHAD Annual Campaign, Company Chair for Baker’s Supermarkets in 99’ United Way/CHAD campaign with 98% employee participation, Arthritis Foundation board member and I was a Food Bank for the Heartland volunteer and board member.
Since I was diagnosed with aplastic anemia I’ve been sharing my story of the great medical care I’ve been receiving at Nebraska Medicine through video, blogs, a bone marrow drive to register potential bone marrow matches and the We Can Radio Cure-a-thon with Waitt Radio for the new Buffett Cancer Center at Nebraska Medicine in partnership with UNMC.
Aside from serving as a volunteer with the Arthritis Foundation and Nebraska Medicine, I volunteer with the Ronald McDonald House Wings & Wheels event, which Nebraska Medicine is a title sponsor. I always think of children who must travel out-of-state for medical care and need a place to stay with their families. I’m so fortunate to be here today considering everything my body has been through, especially having been on a ventilator and learning to walk again - which is a challenge. I’m not able to be on aggressive arthritis meds, like Enbrel, anymore because of my aplastic anemia. It has taken a toll on my arthritis. I have limited mobility and balance. But I am working to increase my range of motion and balance through warm-water physical therapy through Athletico Physical Therapy.
I would not be here today without the amazing medical care I have received, research, programs and services through Nebraska Medicine and the Arthritis Foundation and support from family and friends. I am a huge believer in research because when they are studying research to help treat or cure arthritis, they might stumble upon something to help another disease - like cancer or AIDS.
Although Shara passed away in 2022, we remain thankful for her service to the Arthritis Foundation, CHAD and United Way. Shara used her available time and energy to raise awareness and funds to find a cure for arthritis and improve the quality of life for those living with arthritis!