Updated: Oct 25, 2021
Josette: Meredith, thanks for joining me here today. I’ve been so looking forward to introducing you to our Birdshot friends. Can you tell us about your journey to diagnosis?
Meredith Brinegar Cross: On a morning in the early part of spring 2012, we started a huge construction project on our house. I walked out to say hi to the lead foreman on my way to work, but gave up because he was filling our air with black junk with his sawing. It was also inside. Turned out it was a ton of floaters and black haze, not the foreman’s fault. I went to work and tried to act normal.
By that afternoon I was panicked and went to my regular eye doctor. He was worried I had torn retinas and sent me to a retina doctor in DC. That doctor couldn’t see anything wrong with me, and told me to come back if it got worse. I saw him many times. He sent me for lots of tests. He eventually said he thought I had “cancer associated retinopathy” and that I should go to the National Eye Institute, but never followed up. You cannot go there without a referral. And from my Googling, it appeared people die from cancer associated retinopathy, pretty quickly.
So, I asked my primary care doctor for help. He got me into the head of retina at Johns Hopkins that week. No one had mentioned Hopkins has a world renowned eye hospital. Dr. Neil Bressler saw that my veins in my retinas were leaking. He got me to Dr. Jennifer Thorne the next week. When she met me she mentioned several possible diagnoses, including Birdshot. She said it would be a journey. She got the test for cancer associated retinopathy because I was panicked. She promised it wasn’t that. She did all the “rule out tests” in a 12 hour day at Hopkins, and started me on high dose prednisone as soon as that was safe. The HLA-A29 test came back positive in a month. The steroids cleared up my vision a lot in a month. So we started the taper, added Cellcept, and went with Birdshot. I didn’t really believe I had birdshot until I had a breakthrough flare with hundreds of lesions a couple years later.
Josette: In what ways has birdshot affected your routines, either personally or professionally?
Meredith: It has changed my life dramatically, mostly because it had changed how I think of things. I didn’t change my work - I’m very determined, and work crazy hours as a lawyer. At the beginning I was very sick from the meds, but that eventually settled down when we found the right cocktail.
Dr. Thorne had no idea how hard I work, and it worries her a lot, but she’s been good about supporting me and adjusting her treatment to fit my life. Pre-Covid, I traveled constantly on business. I learned lots of techniques to avoid getting sick from my weakened immune system, but still got sick a lot (pneumonia, flu, etc). But, as I said, I am determined.
J: Are there additional steps you've taken that are helpful in managing your birdshot symptoms?
M: For client meetings in sunny conference rooms I have yellow tinted glasses that help with glare. I joke I look like John Lennon.
Two more things: I have black out shades in my office, and I buy cars that are slightly higher than sedan height with lights that follow the road and are brighter.
Mostly, I’m pretty functional, thanks to Dr. Thorne.
J: Tell us something about yourself that’s not related to birdshot uveitis.
M: I’ve been married for 40 years to a wonderful man.
We have a son who is my favorite person. He’s a total sweetheart. I adore his wife.
My grandson is the cutest 2 year old in history. I’m the luckiest gramma in the world.
Also, I’ve been a corporate finance securities lawyer for 38 years. In the first Obama administration I worked at the SEC and testified in Congress constantly about what to do about the financial crisis. I love what I do, and love helping younger women succeed in my field.
J: I am happy for your joy in both your personal and professional lives, and yes, your grandson is very cute!
Your family has established a fund that supports Birdshot Research at Johns Hopkins University. Can you tell us more about the fund and your experience working with Johns Hopkins?
M: We’ve done a few things to support birdshot research at Hopkins. At first I decided to support the research by establishing the Birdshot Research Fund and raising more than $500,000 for it from friends and family, plus my giving. A key part of that effort was to have a full time birdshot research fellow for the first year to get the projects started.
Then I decided to endow a professorship to provide lasting research dollars. That’s a huge commitment, but it means a lot to me and my family that this permanent funding and legacy will help patients with eye disease forever. With Hopkins, we established The Cross Family Professorship in Ophthalmology several years ago, and Dr. Jennifer Thorne was named the first Cross Family professor. She uses money from the endowment, plus from the Birdshot Fund, for birdshot research. My husband and I also joined the Hopkins Wilmer Eye Board of Trustees. I view my role on the board as making sure they focus on rare diseases like birdshot.
I do all of this because it seemed like birdshot patients need research dollars and a great institution helping us. And I love Jen Thorne’s passion for all of us and for science and research.
The whole shebang has helped me feel like I’m taking charge of my situation. My friends (including Jen) would tell you I’m the ultimate control freak. This is all the control I could gather up with this crazy diagnosis (I had no idea there were eye conditions like birdshot).
J: Thank you for the many ways you’ve supported both Johns Hopkins and BUSNA. Are there current or new particular projects you’d like to see us continue?
M: I’m delighted to help with BUSNA. I think it is great that you are an information source for patients. The group in the U.K. was really helpful to me when I was first diagnosed.
J: Finally, do you have any encouraging words for newly diagnosed birdies?
M: Definitely! It will be okay.
I didn’t think so at first. I am doing what I really want to do. I don’t love the meds, but they work. I’ve reached my big goals of being able to see my first grandchild and live near the beach (I have adjusted to the glare). And I still drive - fast!
Meredith, it has been a pleasure chatting with you about all thing Birdshot. You have helped increase awareness of Birdshot Uveitis, and you've been generous in your support of research. On behalf of all birdies, thank you very much!
Birdshot Uveitis Society of North America (BUSNA) is a volunteer organization comprised of persons diagnosed with Birdshot Uveitis. It provides information and support for North American patients and also raises funds for Birdshot Uveitis research. For more information, please visit our website.
Birdies, friends, family and medical professionals are invited to join our BUSNA community at Join us! | Mysite (busna.org)
If you wish to contribute to BUSNA, please visit Make a Contribution | Mysite (busna.org)