CANADIAN BIRDSHOT COMMUNITY CONNECTIONS — Birdshot Uveitis Society of North America

Blog July 2024

It’s the time to enjoy those summer activities and celebrations in meeting up with friends and loved ones! BBQs’, family reunions, and warmer weather create opportunities to connect.

BUSNA would like to introduce you all to some Canadians with Birdshot who have very eloquently described their journeys, their shared experiences in connecting with others living with this chronic disease and the value of these lasting friendships.

JENNIFER CAGGIULA - ONTARIO

Having only joined a few weeks ago, I can honestly say what a relief it was to connect with women who have been through similar situations. Mari specifically, your time and guidance was so valuable.

This can be a very frightening experience….I have had a significant decrease in my eye sight in a very short period of time, however understanding what “may” work and how others have navigated this disease has helped so much both mentally and physically. Medical support can only take us so far…..but hearing, learning and leaning on other women who are suffering from this disease is truly the medicine that helps the most!

JENAT McCELLAND - ONTARIO

Never in my wildest thoughts did I ever think I would be a member of such an exclusive group as BUSNA .

But in Feb of 2020 the word came that I in fact had Birdshot.

I immediately sought out information in Facebook and the WWW.

BUSNA popped up and I joined. I was welcomed by members and I received a private message from Mari, a fellow Ontario member.

As it turns out we had a friend in common. We made an immediate connection. She was a wealth of information with a birdshot story.

Fast forward to 2022 I had the wonderful opportunity to meet her in person. Mari was joining her daughter in the west and they were making their way back to Ontario with a camping trailer and wondered if they could camp in our yard. It was an resounding “YES” .

I would get the opportunity to meet a fellow Birdie in person!

They arrived in Desbarats and we sat over a cup of tea getting to know each other.

I look forward to the next time we meet up again.

We might be a small group but what we share is so personal to each and every one of us that friendship blooms from any opportunity we have to meet up!!

JANE BOIS, THERESA JAMES and KELLY ANNE - ONTARIO

I feel blessed to have been able to meet in person with two fellow birdies. It has been a tremendous comfort to be able to compare notes with these two other ladies, Theresa and Kelly Anne, who understand the emotions that this disease evokes. Meeting and chatting over lunch this last several months has helped ease the burden of the roller coaster of meds, tests and doctors appointments. We have shared our tears and our woes and best of all our joys. If you are able to get together in person with other birdies I can strongly recommend the experience. Kelly Anne adds.. I would agree with exactly what Jane said and feel I am tremendously grateful to have friends who understand and support no matter what part of the journey we are on.

*Left to right: Theresa, Jane and Kelly-Anne*

SHANNON MCMANUS - ONTARIO

Following seven years of experiencing bizarre vision problems and many trips to ophthalmologists, I finally got my birdshot diagnosis in 2007. A lovely young doctor at Toronto Western Hospital said the words: “Have you ever heard of birdshot?” and we went from there.

At the time, the future looked pretty bleak. Birdshot appeared to be a very, very rare disease. The few studies that existed indicated that over 90 percent of patients would be legally blind within 10 years of diagnosis. I was told that the current treatment, high doses of steroid drugs, was not proving effective. It was suggested that I leave the Canadian winter and go south to get sun. There appeared to be little or no evidence of this autoimmune condition in countries with warm climates.

I was lucky enough to be referred to uveitis specialists who were prepared to try new drug treatments for immune suppression. In addition to the drugs, I did a vitamin regimen recommended in a British study, and I used a Dr. Andrew Weil hypnosis tape to calm my immune system and lessen my anxiety over the diagnosis. I was also lucky to meet other Birdies. I first heard from Karen, a fellow patient of Dr. Theodore Rabinovich, my doctor at the time. We were quickly joined by Mari Schlorff, who has become

an important Birdshot activist. We contacted other Birdies and began holding meetings at our homes. There were only five or six of us at our first meeting, but that number grew.

We are now in contact with Birdies across Ontario and the country.

I have been in remission and have not needed drug treatments for many years now. I continue to see my uveitis specialist every six months and I do the eye tests regularly. Contact with Birdies continues to be important to me. It offers an opportunity to share information (and hope) and have social contact with people who understand the fear associated with this diagnosis.

We have come so far in the recognition and treatment of this rare autoimmune disease. The prognosis is far better it was 20 years ago. Unfortunately, I continue to talk to people who have symptoms of birdshot but are not getting a diagnosis. That is another important reason for this

group, and its campaign to educate people and publicise Birdshot, which is so important.

MELISSA SHARPE - NEWFOUNDLAND/LABRADOR

I first heard of Birdshot day in the spring of 2023, and I knew I had to find a way to make it to Philadelphia for April 6th, 2024. Having a rare disease can feel quite isolating, although the online Facebook groups, and virtual meetings of The Gathering offer great support, there is just something special about being in a room with others who are going through the same things you are. Birdshot day 2024 was a coming together of Birdies from all over North America (and even the UK). We put faces to names that we had only read about, we laughed, we talked, we connected, and furthermore we all left there having made some new friends. I am thankful for the invite to attend Birdshot day 2024 and I look forward to seeing you all again at the next one!

CYD O’NEILL - BRITISH COLUMBIA

I was diagnosed with Birdshot Chorioretinopathy in December 2024, at age 55 years. My diagnosis came with shock, disbelief and fear. Having no idea where to turn, I search this rare autoimmune disease and found the Birdshot Uveitis Society of North America (BUSNA). I sent an email via the contact us link on the website and received a reply from Mari, the very same day.

The support, compassion and understanding Mari showed me was second to none. If I had questions that Mari was unable to answer, she sent out messages to fellow Birdies who promptly replied.

I can’t even begin to explain how invaluable this non-profit organization and their members are. As I continue to navigate through this unfamiliar, scary territory, I know, if I have any questions or concerns, all I have to do is reach out and someone will be there.

I attended Birdshot Day in Philadelphia Pennsylvania in April 2024, where I had the opportunity to meet other Birdies from all over North America. Having the opportunity to meet these resilient, strong men and women gave me much hope and reassurance that I am not alone. Knowing that others have experienced the same or similar symptoms that I have gave me hope that not all is lost.

It will be a journey, with many ups and downs for the rest of my life, but knowing I have BUSNA and all the other Birdies to lean on, it gives me much peace knowing they are only a click away.

I want to express my gratitude and appreciation for Mari and the BUSNA group.

ANNE OVERHOFF - ONTARIO

Like many of you Birdies, when my symptoms of birdshot started I thought it's probably normal, until the symptoms increased and it was no longer normal. I was very lucky to have a quick diagnosis and started treatment immediately. My Retina Specialist recognized very pale spots on my retina and ordered HLA-29 which was positive. He said birdshot is hard to treat, very stubborn and chronic in nature.

I "googled" birdshot and read everything. The best source of information was Facebook (crazy right) but I found the Birdshot Uveitis Society (International). An incredible source of information and support. That is where I met Marie (Mari) Schlorff, the group lead and facilitator of the "Canadian Birdies". She is also on the Board of Birdshot Uveitis Society North America.

Birdshot is so rare it is so important to be able to connect with other people who have birdshot. Thanks to technology, we are able to do this via birdshot facebook sites and virtual meetings.

Marie welcomes the new Canadian Birdies on Facebook/Messenger and organizes the virtual zoom meetings so we are able to welcome the new members and support them. I remember my first meeting with the Canadian Birdies. They were supportive and answered all my questions. I felt my anxiety level decrease. It is important to have the Canadian Birdshot group since our health insurance and type of tests, and medications can be different from other countries. There are so few Birdshot specialists we help each other out on where to access treatment.

You can imagine my delight when I found out that Marie Schlorff lives only 2 hours from me. One beautiful summer day, we each drove halfway and met for lunch in Orillia, Ontario. The photo is from our lunch date! Marie is on the left and is wearing her hair up.

LEANNE OSWALD - PENNSYLVANIA

As a board member of BUSNA, I was thrilled when fellow board member, and Canadian liaison Mari Schlorff contacted me about a possible meet up with a newly diagnosed Birdie, Emma Smith and her mother Carmen. My husband Dan and I live in Pennsylvania, but had a trip planned in early June to Vancouver and the Canadian Rockies. After chatting with Carmen about meeting up when we arrived in Vancouver, a date was planned! We met at our lovely Fairmont hotel at the Vancouver waterfront, and enjoyed tea and great conversation getting to know each other.

Emma was recently diagnosed with Birdshot Uveitis at the young age of 35. I could so relate, I was diagnosed at age 39, in 2003! As we entered the restaurant, Emma was concerned about the glare from the large windows, one of our many symptoms of Birdshot. I assured her that as her treatments progress, and her condition improves some of these side effects will also improve in time. We had an engaging conversation about Birdshot symptoms, treatment plans, and differences in American and Canadian healthcare systems. In the midst of considering to arrange a consult with a Uveitis specialist in Toronto, Emma is moving her vegan chocolate business to another location in Vancouver. Emma is the proud owner of Zimt Chocolates, a delightful vegan, sustainable, chocolate and dessert company, which can be found on her website

Zimtchocolates.com. Emma gifted me with a variety of her chocolate bars, and they are AMAZING! Emma is also passionate about animal rights, and donates a percent of her profits to various animal rescue organizations. We definitely have this in common, as we are both huge animal lovers! I encourage all Birdies to arrange a meet up, I treasure the first Birdies I met with many years ago, as Emma appreciated meeting her first Birdie, me!

*Left to right: Leanne, Emma and Carmen*

BUSNA would like to thank all contributors for their excellent stories of connection and the power of community. Happy summer!