During our 2022 Year-End Fundraising Campaign, we’re sharing a series of Supporter Spotlights. We hope these stories of fellow autoimmune hepatitis (AIH) patients and families will encourage you to make a donation to the Autoimmune Hepatitis Association (AIHA) this giving season. Donations gratefully accepted by visiting www.aihep.org/donate.
In our latest Supporter Spotlight, we feature Carol Joyce, an AIH patient who lives in Virginia. Read more in her Q&A below.
Tell us a little bit about yourself and your connection to AIH.
I was first tentatively diagnosed with drug-induced AIH in 2014. I had taken a bee pollen supplement from a health foods store and that was believed to be the culprit. I was completely asymptomatic and within six months of “watchful waiting” and monthly liver tests, my liver function tests (LFTs) returned to normal range. Everything was fine until 2019, when, once again, my LFTs were moderately out of range. The culprit, this time, was believed to be a statin I had been taking for almost a year. Once again, my LFTs were slowly returning to normal with no medications. When COVID hit in 2020, everything went sideways, and it was impossible to see doctors or have labs. I went into an acute flare in August 2020, was briefly hospitalized, officially diagnosed with a biopsy, and it has been a roller coaster for over two years. After trials and errors with medications, I am finally somewhat stable on Cellcept as my only medication to treat AIH.
What is the most difficult thing about having AIH?
AIH has been the most difficult health concern of my life (to date) due to the sheer uncertainty of everything. Not even my medical professionals, even my hepatologist, really has a handle on this rare disorder. It is hard to be patient, to try not to look too far ahead and to just take things day by day.
How has the AIHA helped you in your journey with AIH?
The AIHA has been a godsend because it has connected me with other patients who are really the only folks who understand this disease. Also, the webinars, online support groups and professional input are exceptional.
Why did you decide to donate to the AIHA?
I am glad to donate to the AIHA because it really is unique. The medical staff who oversee it, and the supporting staff who manage the support groups are so dedicated and completely professional. I feel as if the connection I have to the AIHA provides me with the testimonials and support that I am not always able to access on my local level.
Would you encourage others to donate to the AIHA? If so, why?
I would strongly encourage anyone who is a member of AIHA to support it in any and every way possible. And, I would strongly encourage anyone who has a diagnosis of AIH to join the AIHA!
Is there anything else you’d like to add or say?
I am very glad to see that one of the goals of the AIHA is to reach out to more hepatologists, liver centers, gastroenterologists, etc., nationwide. Sometimes, we, as patients are hampered by our doctor’s lack of knowledge, interest or experience treating AIH. After all, most of us are not within reach of major medical centers or top university hospitals, and the disparity in the quality of care is concerning.