My sister Lois has Birdshot Uveitis
Donation protected
My sister, Lois, and her family are experiencing something that a young family should not be going through. It's a RARE DISEASE. And in Lois' case it's called "Birdshot Chorioretinopathy ". It sounds like something to do with hunting but no, it has to do with the eyes, Lois' vision was a risk. Wish we had a society like this in Cananda: Birdshot Uveitis Society (UK)
It's a bit of a love story. Lois and her husband (David) met in high school, best friends. Each then went their own way after high school. Life brought them back together and in 2000 they got married. Then to make the marriage even more exciting they gave birth to a boy and then a girl. The boy is an exact duplicate of his father and the girl is an exact duplicate of her mother. You couldn't ask for a better combination.
Lois started complaining to David about the fruit flies in the house. David would look around, confused, and say, "what flies?" Shortly after that the fruit flies turned into larger specks, called floaters. She made an appointment to see an optometrist. Under a bright light the optometrist recommended Lois to see a retinal specialist. She was then diagnosed with "Birdshot Chorioretinopathy", which started a 15-year struggle to keep Lois' vision. This also resulted in Lois needing to leave her job and is now on permanent disability; the gradual loss of vision and the pain from it and the treatments was excruciating.
Lois' family have all pitched in. The children have become Lois' second set of eyes. They help her sort socks, she has trouble with colour differentiation. They count stairs for her, she has serious depth perception. Plus they get reading practise when the print on things is too small for Lois to read. The family have spent countless hours hanging out in waiting rooms and travelling to and from doctors appointments. The whole family has been a constant source of support and encouragement.
What is Birdshot Chorioretinopathy?
Birdshot is an extremely rare degenerative autoimmune disorder that causes lesions to form on the retina. These lesions then leave permanent scarring. Over time and without aggressive treatment birdshot will lead to blindness. In Lois’ case treatment has been more difficult due to the lack of specialists in this area. From 2008 until 2012 Lois was on immune suppressants supplemented by oral and IV steroids when her optic nerves swelled which threatened immediate and permanent vision loss.
These treatments did little to slow the progression of this disease. In November of 2014 Lois was referred to the Proctor Foundation in San Francisco to see a world-renowned specialist in birdshot. The specialist advised that a more aggressive treatment was needed and given the limited success of immune suppressants prescribed steroid implants. These implants will last for 3 years and provide a constant dose of steroids directly into the eye. This will significantly slow the disease and the thought is that after 1 or 2 of these implants the disease may go into remission.
So why are we asking for your help?
The catch? The treatment is not covered under the BC Medical system as it is rarely performed (this is a common problem for people with rare diseases). Even if extended benefits cover most of the cost there are still significant medical and travel costs involved as the specialists who do this surgery are not in her home town. The treatment will require 4 - 6 surgeries:
- 2 separate surgeries for the implants (only one eye done at a time) - estimated to cost $15,000 per eye.
- 2 separate cataract surgeries (the steroids cause cataracts)
- 2 possible glaucoma surgeries (the treatment has a 35% possibility of causing glaucoma).
(Each of the surguries will require Lois and her family to travel to the big city, surgery cannot be done in Lois' hometown. This means at least two nights in hotels, ferry costs, and meals for four people. Not to mention the loss of income by David as he takes time off work. Each time could cost $1,200.)
The plus? A significant decrease in the progression of the disease…..and up to three years of limited waiting room visits which means more family time with the kids!
Your help would be greatly appreciated. Your prayers area also appreciated.
It's a bit of a love story. Lois and her husband (David) met in high school, best friends. Each then went their own way after high school. Life brought them back together and in 2000 they got married. Then to make the marriage even more exciting they gave birth to a boy and then a girl. The boy is an exact duplicate of his father and the girl is an exact duplicate of her mother. You couldn't ask for a better combination.
Lois started complaining to David about the fruit flies in the house. David would look around, confused, and say, "what flies?" Shortly after that the fruit flies turned into larger specks, called floaters. She made an appointment to see an optometrist. Under a bright light the optometrist recommended Lois to see a retinal specialist. She was then diagnosed with "Birdshot Chorioretinopathy", which started a 15-year struggle to keep Lois' vision. This also resulted in Lois needing to leave her job and is now on permanent disability; the gradual loss of vision and the pain from it and the treatments was excruciating.
Lois' family have all pitched in. The children have become Lois' second set of eyes. They help her sort socks, she has trouble with colour differentiation. They count stairs for her, she has serious depth perception. Plus they get reading practise when the print on things is too small for Lois to read. The family have spent countless hours hanging out in waiting rooms and travelling to and from doctors appointments. The whole family has been a constant source of support and encouragement.
What is Birdshot Chorioretinopathy?
Birdshot is an extremely rare degenerative autoimmune disorder that causes lesions to form on the retina. These lesions then leave permanent scarring. Over time and without aggressive treatment birdshot will lead to blindness. In Lois’ case treatment has been more difficult due to the lack of specialists in this area. From 2008 until 2012 Lois was on immune suppressants supplemented by oral and IV steroids when her optic nerves swelled which threatened immediate and permanent vision loss.
These treatments did little to slow the progression of this disease. In November of 2014 Lois was referred to the Proctor Foundation in San Francisco to see a world-renowned specialist in birdshot. The specialist advised that a more aggressive treatment was needed and given the limited success of immune suppressants prescribed steroid implants. These implants will last for 3 years and provide a constant dose of steroids directly into the eye. This will significantly slow the disease and the thought is that after 1 or 2 of these implants the disease may go into remission.
So why are we asking for your help?
The catch? The treatment is not covered under the BC Medical system as it is rarely performed (this is a common problem for people with rare diseases). Even if extended benefits cover most of the cost there are still significant medical and travel costs involved as the specialists who do this surgery are not in her home town. The treatment will require 4 - 6 surgeries:
- 2 separate surgeries for the implants (only one eye done at a time) - estimated to cost $15,000 per eye.
- 2 separate cataract surgeries (the steroids cause cataracts)
- 2 possible glaucoma surgeries (the treatment has a 35% possibility of causing glaucoma).
(Each of the surguries will require Lois and her family to travel to the big city, surgery cannot be done in Lois' hometown. This means at least two nights in hotels, ferry costs, and meals for four people. Not to mention the loss of income by David as he takes time off work. Each time could cost $1,200.)
The plus? A significant decrease in the progression of the disease…..and up to three years of limited waiting room visits which means more family time with the kids!
Your help would be greatly appreciated. Your prayers area also appreciated.
Organizer
Paul Donovan
Organizer
New Westminster, BC