Updated: Oct 2, 2020
My name is Andrea and I am currently 50 years old. I have a husband of almost 17 years and 2 teen children. My life took a huge turn at the age of 47 years, but let me first tell you a little about myself.
I grew up in Long Island, NY. My father died of pancreatic cancer at the young age of 50. I was 18 at the time and was attending my first year of college. He was a very quiet man who loved photography and trains so much that we had a train room in our house when I was growing up. I think I got my love of photography and my appreciation for color from my Dad.
At the age of 30 I met my husband on jdate.com. He was my very first date from that website and my last. We've been married since 2003. We lived in New York City until our older daughter was a few months old, then moved back to Long Island for 5 years. When our younger daughter was about a year old we moved to Marlboro, New Jersey.
I started seeing floaters in my eyes around this time, at age 40. It was so annoying when I was reading books on my kindle, and also while driving. My first thought was that was a bug so I tried to shoo it away. Then I started seeing not only the floaters but bubbles.
My optometrist at the time said it was very normal at my age to see floaters and as long as I didn’t see flashing lights, and that all was normal.
I lived with the floaters for a long time until I noticed I wasn’t seeing the signs in front of my face while driving. I couldn’t see the menu that was on the wall right in front of me. Something was just not right.
About 4 years ago, I went to my optometrist again and he said what I was seeing was normal for my age. I sought a different opinion and that doctor sent me to a group here in NJ who is very well known. I first went to a cataract doctor who noticed I had small cataracts in my eyes but could not explain why I wasn’t seeing clearly, so he sent me to their retinal specialist in the group. She diagnosed me (I don’t have the name of the diagnosis) and she treated me with different drops. 'Said they should work and to give it time. After about 6 months, I had enough and went to another retinal specialist, NJ Retina.
The only way that I can describe to you what I saw was a very dirty windshield with lots of spots, bubbles and black lines.
NJ Retina knew exactly what they were dealing with. They took scans and sent me for blood work and WHAM, I got the correct diagnosis. They said that I should see a specialist who treats this kind of uveitis. Of course we googled it and I was scared out of my mind.
I went to Dr. Douglas Jabs for about a year, during which time my Birdshot became stable. I had to change doctors at that time because Dr. Jabs was moving his practice out of state and heading up a clinical research center at John Hopkins. I now get treated at Manhattan Eye, Ear and Throat (MEETH) with Dr. C. Michael Samson and very happy with his treatment.
Birdshot has impacted my everyday life. I’ve had trouble seeing and trouble driving. I’ve also had difficulty driving at night because of the cataracts. Even though they got worse after I had a Triescence injections into both eyes, it was still so worth it - the inflammation was down significantly.
I could not drive at night at all and with teen children who constantly had to go out with their friends, it was difficult. I still, to this day, have difficulty seeing at night, but nowhere near the difficulty that I had following the injections. That was easily fixed after I had cataract surgery last year.
I had many reactions to the medications. They impacted my life. I started out with 60 mg of prednisone and lessened that amount over the course of a year. The prednisone made me very angry, made me very hot, made me break out like a teenager, made me gain weight and also gave me so much energy that I was up all night long. My house was never as clean as it was when I was on prednisone.
The mycophenolate gives me an upset stomach and the tacrolimus gives me the shakes but having regained my eyesight I’ve learned to deal with the side effects. I am no longer on prednisone, which helps, but I have yet to lose the 20 pounds that I gained while on that steroid.
I am constantly trying new things but unfortunately am always hungry. I really don’t have the energy to exercise like I should be doing. I still, to this day, have issues with my stomach but again, I learned to deal with it because I had at least regained my eyesight.
After about 6 months of being on autoimmune medication, I developed shingles - the worst part of this treatment!!!! I had never been in so much pain and according to my doctor, I had a minor case. I also have developed some warts which were removed by my dermatologist.
I am constantly looking for alternative ways of treatment but so far, I am happy for the way things are going. My doctor plans on removing my medication slowly. I started to remove the Tacrolimus but had a little set back with some inflammation in my left eye. I am currently using steroid eye drops and also an eye drop to help dry out that eye. I go back soon and hopefully will be able to stop using the eye drops.
So far, everyone has been very supportive of my condition. It has been very hard on my husband who works full time and has had to play taxi driver for my children. Since my surgery, my eyesight has gotten better. I’ve been able to drive, even at night, but I avoid driving in rain, snow and foggy conditions. Long trips are still a problem. All is good.
I’m so happy that I have found other women and men who have this condition. I am proud to be on the Board of Directors of BUSNA and am also proud of what we’ve accomplished in such a short period of time.
I look forward to providing information to patients. I am hopeful that someday a treatment will cure this autoimmune disease.
Andrea, thanks for sharing both your story of perseverance and your beautiful photographs! Good luck with your continued efforts to improve your health and vision. You're an inspiration!
Birdshot Uveitis Society of North America (BUSNA)is a volunteer organization comprised of persons diagnosed with Birdshot Uveitis. It provides information and support for patients and raises funds for Birdshot Uveitis research.
Visit our BUSNA website!