Welcome to our BUSNA blog, bird's eye views! We plan to provide occasional posts that we hope will enrich your understanding of Birdshot Uveitis.
The more birdies that Christine Tattersall Griffith met during the ten years since her diagnosis, the more resolved she became to create a Birdshot community here in North America. Now that the Birdshot Uveitis Society of North America is a reality, we welcome Christine for our very first bird's eye views interview, where she shares her own Birdshot story and reveals her hopes for BUSNA.
Josette Abruzzini: Christine, thanks for getting together with me for the inaugural post of our bird's eye views blog! What’s your beverage of choice on this hot summer day?
Christine Tattersall Griffith: I grow mint every summer, and don’t often use it; however, this summer I’ve been making “tea” with the leaves and hot water, and I add some local honey. It’s simple, but delicious.
J: Sounds refreshing! I’m drinking herbal iced tea as well - lemon, green and hibiscus!
Before we chat about BUSNA, tell us a little of your own Birdshot story. How did it first present to you, and how was your journey to diagnosis?
Christine: My two biggest symptoms were migraines and floaters, which started in 2009. I discussed both with my doctors and was told these were common for my age.
I had serious stress in March of 2010 with family members in two separate hospitals in Florida. While visiting them I realized that I was having trouble seeing.
After I returned home to Pennsylvania I visited my optometrist, the first of several doctors. I went over a year without a diagnosis, which was incredibly frustrating. I finally had an appointment at Johns Hopkins and by the end of that day I had both a diagnosis and a plan!
J: Sounds like you're in good hands now. Unfortunately many people with Birdshot Uveitis wait several years before getting a proper diagnosis. How does Birdshot impact your everyday life?
Christine: The biggest hurdle is no longer being able to drive - a huge challenge with children in suburbia, USA! The first few years were a struggle - I left my job, and my husband’s busy work schedule included frequent travel.
I’ve tried my hardest to not let Birdshot affect my children’s lives in a negative way. I am happy to say my youngest has just turned 18, and we didn’t only survive - our struggle with Birdshot has actually brought us closer together.
In 2019, I traveled solo for the first time since my diagnosis, and this summer I have cycled over 200 miles. I hadn’t been on a bike in years!
Early on, a fellow patient told me that at some point that I would get back to living. Happily, I think I am there!
J: I first met you about a year ago at Birdshot Day in Philadelphia. Thank you for helping organize that. It was my first time meeting any other birdies and they were amazing! You had top notch speakers there as well.
What single experience most inspired you to start a not-for-profit organization for Birdshot patients? How long ago did you have the idea, and what responses have you received from others?
Christine: Thank you. I’m glad to know that you found the day so helpful! My inspiration for starting a non-profit probably came from organizing that Birdshot Day. Several newly diagnosed patients attended and they reminded me of how isolated I felt when I was first diagnosed. I remembered how helpful it was to me when I found people online who had Birdshot. Then I found some on the east coast. The circle kept getting smaller, very small in my case, as there’s another patient who lives only 30 minutes away.
On top of that, the work that went into the Philadelphia event inspired me to do more. I learned to network quickly, and even the response I received from complete strangers, many with no connection to the Birdshot community, was humbling. Everyone I reached out to for Birdshot Day gave advice, encouragement, resources, compassion and support, both to the event and to our group. The experience was very encouraging.
J: It’s amazing that you’ve been able to get BUSNA off the ground in the middle of a pandemic. What have your biggest challenges and successes been so far?
Christine: In some ways the current environment, which has many of us are spending most of our time at home, has helped us stay connected. It’s allowed extra time to get BUSNA off the ground, and that’s been a silver-lining in a pretty bad year.
J: Tell us some of the ways BUSNA will be able to help birdies in the future.
Christine: We are developing an Ambassador program. Ideally we’ll have representatives from many states and territories.
The ambassador will be a volunteer who has the ability to connect with patients from their specific area. They can be a great asset and first contact for those who are newly diagnosed as they have knowledge of hospitals, doctors and resources in their area.
We also hope (post COVID) to host additional Birdshot Days, as happened in Baltimore in 2017, and Philadelphia in 2019. We’d love to have people from the UK and international group attend as well, as they have been graciously inviting us to their events.
We feel that meeting fellow patients is as important as learning from the incredible array of speakers at these events. Knowing you’re not alone, and having the support of others who understand, are crucial aspects of an effective plan.
J: Thank you for inspiring so many of us to become involved with BUSNA. What can other birdies in North America do to help?
Christine: My pleasure!
On the simplest level, birdies can “like”, “share” and “follow” us on Facebook, Twitter and Instagram, if they’re on those platforms. Another way is to join our community on BUSNA.org.
Also, we are a nonprofit run by volunteers. If you feel so inclined, we appreciate each and every donation. We plan to contribute every dollar we can towards Birdshot Uveitis research here in North America.
Lastly, get involved. Reach out and let us know where you are. And if you know other birdies, let them know as well. Together we can make a difference in each other’s lives. We can be part of finding a cure for Birdshot Uveitis!