Jenell's Team Team Page

Thank you for visiting my Team Fundraising page to support the "Stepping Out to Cure Scleroderma" event!

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Help our team bring more awareness to scleroderma so we can find a cure!

Jenell's Story

Friends, the past year and a half has proven to be immeasurably challenging for so many people. Like many others, I’ve had to face my own set of challenges. Spring of 2020, early in quarantine, I began experiencing really intense levels of exhaustion. Initially I chalked it up to long work hours, the stress of trying to help run a school in a pandemic, and the weight of managing the stress of teachers, students, parents, and other community members. Soon, though, our family neighborhood walks became too difficult for me. I found I couldn’t breathe after a few blocks. I met virtually with doctors, visited an early covid-19 testing site where everyone was in hazmat suits, had my lungs x-rayed, tried inhalers, and was left with no answers. Eventually I went in for bloodwork (reluctant because I was terrified to be in any medical facility given the threat of covid). At this point, I could not walk more than a block or two without feeling as though I needed to lie down. I nearly passed out in the doctor’s office, had to call Sullivan as I drove home, afraid I may lose consciousness. He had to help me from the car into the house before I collapsed on the floor. My phone rang at 10pm that night and the doctor on the other line told me I was severely anemic (there was very little oxygen in my blood), was suffocating from the inside out, and needed transfusions immediately. I was thrilled to have an answer and an explanation for how I’d been feeling (“suffocating from the inside out” was exactly what I’d felt like for weeks). I went in for a full day of blood transfusions the next day. Following this, my amazing doctor, journeyed with me to figure out exactly why this had happened. After a few months of tests and procedures, I was faced with a very difficult diagnosis. Scleroderma. A diagnosis of scleroderma is terrifying. Until you go through a series of tests over the course of some months, you don’t know whether this disease will take your life within months or will plague you for years. Scleroderma literally translates to hardening of the skin. Scleroderma is an incurable autoimmune disease in which your own immune system attacks healthy connective tissue in your body. For many, that means hardening of the skin which can lead to loss of mobility and severe limitations, for others it means hardening of internal organ tissues in the lungs, heart, GI tract, kidney, and vascular system.

For me, scleroderma means circulation issues, gastrointestinal issues (including reflux, esophageal dysmotility causing difficulty swallowing, and GAVE syndrome, which causes anemia), raynaud's (an intense sensitivity to cold causing loss of blood and numbness in in my fingers and toes), headaches, exhaustion, and other mild symptoms. Each day there are reminders that my body is attacking itself. This can do a number on my mental health. In addition it has meant multiple procedures, numerous iron infusions, tests on my lungs, heart, kidney, and other major systems, and lots of medical appointments. For now, I try to remind myself how lucky I am that my symptoms are mild compared to many who live with this illness and I commit to living the fullest life I can.

There is still very little known and understood about scleroderma. Most doctors don’t understand the disease. It is up to patients to learn about it, advocate for themselves, and drive their own treatment. I am incredibly fortunate to have connected with the local chapter of scleroderma warriors. As one friend put it “apparently everyone with scleroderma is so kind.” I thank God for the friends I’ve made and the support I’ve found through this group. As difficult as it is to share this publicly, I am doing it to help spread awareness in hopes that with that will come more understanding, more treatment options, and a cure. Thank you for reading my story. If you’re so inclined, please join me next Saturday in Stepping out to Cure Scleroderma or consider donating to my fundraiser. Click the links to either join my team or donate. If you are unable to do either, prayers are always welcome, especially for the friends I’ve met who are suffering so much from this disease. Thank you!