Birdshot Uveitis Society has a growing number of members from Canada and the United States. Dagmar Cole, who lives in the US and has had Birdshot for many years, runs an on-line support forum and we at BUS have got to know many of the people who communicate on this support forum. Recently, Karen, who is active on that forum has joined BUS. If you have used Dagmar’s forum, you will know her as MOMDDS. Karen has a background in dentistry, but she has now set up a counselling service for people with low vision. Karen also acts as a catalyst for a Birdshot group in the Toronto area. She says “it is a very casual affair. I think the more we “birdies” communicate with each other, the better chance we have of accessing ideas, research and positivity.” So if you live in Toronto and have Birdshot Chorioretinopathy and you feel in need a bit of support, Karen and the group are there to help.
We thought that BUS members would like to read about Karen’s story. This is what Karen says on her website:
“I thought I needed a new prescription for my glasses…
In March 2008 I went to the optometrist for new glasses. She couldn’t make my vision 20/20, no matter what lenses she tried. She then dilated my eyes and ….the insides were full of debris!!! So began my journey…
Maybe I was in denial about having a serious problem, but I did not book an appointment immediately. My physician warned me I could possibly lose my vision from a potentially serious problem. That is what it turned out to be – Birdshot Choroidoretinopathy- a rare, potentially blinding disease.
Unfortunately for my uveitis specialist, he had me as his last patient of the day. I had done a lot of research on the disease when I was diagnosed and printed it out in order to ask questions. He took my research papers away, informing me he would give me all the information I would need, which he did. Then for the next hour talked, listened, got frustrated with me, yet clearly outlined the information I would need as I became an eye-disease patient, one who could eventually be very impaired.
The experience was traumatic for me and my family. My future as a working dentist was uncertain, and I was terrified at facing a future with visual impairment. My vision continued to deteriorate over the next 6 months. I needed to stop working. It would take one and a half years to have my vision stabilized with medication and injections, although it never returned to normal.
My challenge was to control my anxiety, depression and panic. No one had heard of my disease, and it proved to be a very rare one. My friends and family tried to support me. How could these people understand what I was going through? Having a rare disease, impaired vision and a massive life change made me feel alone and terrified.
I’ve never been a quitter, my personal motto is “just do it!” Thus my Birdshot journey began. I started researching everything I could learn about the disease and its treatment, used the Internet to find others who had it and created a Toronto online group. I looked for emotional support specifically for people who were developing a visual impairment… it didn’t appear to exist in that form.
I was entering a new phase of life. After speaking to professionals about the need for emotional support in the vision-impaired community, I headed to college for a post-graduate diploma. I graduated as a Social Service Worker, gaining concrete knowledge and experience in counselling skills, advocacy, case management and finding resources in the community. These refined the skills I already had from decades in the health care field and extensive volunteer work.
No one should feel alone during such a traumatic time of change and uncertainty. I therefore decided to be a catalyst for positive change in others, and Vision Support Network Ltd. was founded.”
Please get in touch with us if you want to have your contact details passed on to the Toronto support group.
Annie and Rea
Sorry, last link in above item didn’t work. Typed the info into my web browser and it worked fine. Job for the techies?
How weird? Probably something I did wrong like put a space in. I thought I had checked them all. Sorry! It’s working now. Thanks for drawing it to our attention
Hi, I was diagnosed with Birdshot in September 2016 and am currently on Cellcept 1000mg BID. Right now it seems to be arrested as there was no inflamation/ulcerations at the last exam and I have not noticed any floaters since November 2016. My question is how long do I have to take the Cellcept? Is it prudent to go off of this purple poison and have my eyes checked every 3 months? This being such a rare disease even the specialists are in awe of it.
Hello Jim, I have sent you. a private email reply.
I am currently 70 and was diagnosed in the US with Birdshot in 2011. Currently, the disease is under control through daily Selsept and Remicaide infusions every six weeks. My wife is a Canadian citizen and we are considering relocating from the US to the Greater Toronto Area. My concern is continuity of treatment and finding an opthomoligist who specializes in treatment of the disease.
I will ask members of our Facebook Group who they see in Toronto area. There are a few uveitis specialists in Canada, listed in this document which was produced by a french person with Birdshot. https://issuu.com/sylvainmignonhorusbirdshot/docs/listing_pr_birdshot_world_22_01_201 I am not certain about how easy it is to get Remicade in Canada, but there should be no problem with cellcept. Having said that I also know that a few Canadians whocome to the US for their Birdshot treatment….
Can I suggest you join our facebook group, One of the members Marie is happy to chat to you if it would help. She and others speak very highly of her specialist who sees other Canadian birdshotters. This is what she says ” I live an hour N of Toronto and have had an ophthalmologist here for 11 years who specializes in uveitis. I would recommend her. Her name is Dr Larissa Derzko-Dzulynsky and there are several on the Birdshot site who see her as well. I am happy to answer questions if you want to privately message me on Messenger or alternatively on this site. Take care, and good luck” – ” Kensington Eye Institute, College Street, Toronto, Ontario. ” Another speaks of the London Even Eye Institute. My advice would be to get in touch with the doctors and see what they have to say about. your treatment, before. committing to actually moving there.
I would like to join your FB group please. What is the name? I was diagnosed just yesterday at the Ottawa Eye Institute and have started taking Cyclosporine today.
John, the birdshot group on facebook to join is Birdshot International. We have the support oand backing of uveitis specialists across the UK and also in Europe and the US. There are other groups, and obviously the choice is yours, but we have been in existence since 2008 and we are also a registered charity. If you go to the home page of the BUS website and scroll down, you will see a facebook group to click on. You willhave to wait for your membership to be approved, but it shouldn’t take very long, but you will need to agree to the rules we have set. before being admitted. This is to stop cranks from posting on our group with Spam.
See you on the other side…. Annie
HI John, I hope that have been able to connect with a specialist. If you require any help please do not hesitate to contact me, Regards, Marie Schlorff
Thanks Annie, happy to help anyone In Ontario or Canada. Dr Derzko is now located at the Vista Eye Centre in Toronto and at St Mike’s Hospital Toronto. Take care!
I suggest you join the Birdshot international Facebook group (linked to this website. There is lots of support there. As for information the BUS website does it’s best to keep up-to-date. Slowly we are getting different drugs/implants to try if the usual immunosuppressants do not work. Generally the fear of starting on immunosuppressive therapy is far worse than the actuality. Also do take a look at the Birdshot Survival Guide, listed in the Birdshot tab of the website. Annie
Hi. Not to sure what I am looking for but I was diagnosed with Birdshot just yesterday at the Ottawa Eye Institute. Took my first does of the prescription today and quite frankly it scares me.
Hello. Thank you fir this website and fir the black background! I was diagnosed earlier this year and am very frightened by this. I’m hoping I can see a therapist to address the emotional needs more than the physical needs. I’m an artist and have always made a living as a visual artist, unfortunately I find my hospital/doctors don’t seem to understand the emotional aspect of this disease. I’m located in Los Angeles, California if anyone out there has any leads or tips on dealing with the anxiety I’m sure we all feel. Thank you so much! – Katrina