A delightful young girl we have been honored to get to know was recently featured on KPLU 88.5 Radio in Seattle. Greta is such a sweet girl, listen to how her story intertwined with that of a young adult, Nina when they became roommates at Children’s Hospital in Seattle. Story by Gabriel Spitzer KPLU.
Some days we have the opportunity to watch something truly spectacular and healing occur when our patients meet each other. Today was one of those days. The devastation of retinoblastoma has the potential to tear a lot of people apart, today it brought two young ladies together in hope and friendship.
Ashlyn is a sweet 2 year old who came in today to get her first prosthesis. She has been a bit tentative of the whole process of trying on her prosthesis. Coincidentally, (if you believe in coincidence) Sydney a very sweet 16 year old came in to begin the process of a new prosthetic eye. Without any prompting, Sydney introduced herself and showed Ashlyn how easy it was for her to put in and take out her own prosthetic. Ashlyn’s cute little brown eye got so big and her heart grew so brave. She sat right down and did an amazing job of allowing us to install her prosthetic eye. She was so brave and so proud of herself. We are so proud of her and Sydney and their parents who were able to witness this very sweet and hopeful moment in time. Thank you Ashlyn and Sydney for warming all of our hearts today!
Scientists find gene linked to child blindness – A team of scientists, including researchers in Edinburgh, have identified genetic changes linked to coloboma, which affects around one in every 5,000 births.
A gene known as YAP1 was found not to be working in some patients, leading to the condition. The researchers hope the findings can lead to better diagnosis as well as treatments which may be able to reverse the problem.
Super Bowl starts in an hour. We can’t wait!!! We have definitely noticed an uptick in Seahawks fever around the region. Occasionally we put “tattoos” on the top of patients eyes, we have been doing a lot of Seahawk logos in the last couple weeks! Here is a sampling of the 12th man energy. GO HAWKS!!!
We couldn’t resist posting these beautiful photos from a patient who recently got married. She is such a stunning and beautiful bride. Love the bold colors and festivity!
Here is what the bride had to say:
“I wanted you to see your handy work in my wedding photos. No one could have ever known that I have a prosthetic eye. Because of you I felt so confident and beautiful on my wedding day.
Thank you thank you thank you!!!!!!!”
We are so happy to have found Specs for Little Heroes last year. We were so impressed with this organization that our office voted to support them this year. Many children have been blessed by the work of this organization – ensuring that children affected by retinoblastoma can receive and wear appropriate and well-fitting glasses to protect their eye(s).
Specs for Little Heroes was founded by Erin & Adam LaFleche after their son Justin was affected by retinoblastoma. They discovered the high cost of protective eyewear for kids and that insurance often will not cover this necessity.
Here is a great article written by the mother of one of our young patients. She is a true inspiration and a model to others for persevering and overcoming obstacles.
Here is a letter we received from ICAN, an organization that partners with parents and doctors of patients with anophthalmia and microphthalmia to better their lives. What a great project to aid these kids! ICAN can be reached at: http://www.anophthalmia.org.
I am writing to tell you about an exciting project that we are about to undertake which we believe will have great importance to children and families affected by anophthalmia or microphthalmia.
This project will investigate how children with visual impairment develop a sense of their own appearance and body image and what effect this has on their psychosocial development and well-being.
By learning how children with anophthalmia or microphthalmia think about their appearance, parents, caregivers, and educators can hopefully provide better support as these children mature and become more aware about their appearance and what options may realistically be available for improvement in this regard.
In an effort to develop this unique look into the needs of visually impaired children and their families, ICAN has offered to partner with a multidisciplinary team of specialists at The Children’s Hospital of Philadelphia, headed by James A. Katowitz MD, who has been involved in the care of many members of the ICAN family.
We believe that a better understanding of the visually impaired child’s concept of appearance is of critical importance for the psychosocial benefit of each child as well as for his or her entire family. This becomes even more complex given the changes in facial appearance associated with these disorders, whether one or both eyes have been affected. Significant improvement in appearance and of body image will likely help these children to function better in both their personal and professional lives.
We initially plan on working with children between the ages of 8 and 18 years and with at least one of their parents.
Any thoughts you may have will be most appreciated, whatever the age of your child, as your participation can be helpful in many ways.
Please respond to me by email within two weeks at: firstname.lastname@example.org
Tanya Bardakjian , M.S. C.G.C.
Certified Genetics Counselor
Albert Einstein Medical Center
“Eye Power Kids wear creates t-shirts to make patching and glasses fun for kids and adults! We want all kids to be proud to wear glasses and patches because they are all little super heroes. We created Eye Power Kids Wear because of our son Scott who was born with a congenital Cataract. He wears a contact, glasses and patches each day and we want him to grow up a happy little super hero proud of who he is.”
“There are so many kids out there that they hate to patch, and it’s a struggle everyday, and now they want to put on their patch in the morning because their patch gives them ‘superpowers.’”
Eye Power Kids Wear
We are so excited to share this great website with you. I saw my first patient come in 2 weeks ago wearing her eye power t-shirt, she was so brave and so excited! Here is an article about the work Jessica and her company are doing, desert news.
Coating the inner and outer surfaces of the artificial eye is a tear film. People normally blink the eyelids about every six seconds to replenish this tear film. Tears have four main functions on the artificial eye:
- wetting the conjunctival lining of the socket, preventing damage due to dryness,
- creating a smooth optical surface on the front of the microscopically irregular acrylic surface,
- providing lubrication and acting as a vehicle to remove debris from the prosthetic surface, and
- containing an enzyme called “lysozyme” which destroys bacteria.
The tear film resting on the prosthetic surface has three layers:
- Lipid layer,
- Aqueous Layer, and
- Mucin Layer.
The top layer of the tear film is the lipid or oily layer. This layer prevents the aqueous layer beneath it from evaporating, as well as preventing the tears from flowing over the edge of the lower eyelid.
Below the lipid layer is located the aqueous layer of the tear film. This middle layer is the thickest of the three tear layers. The aqueous fluid contains salts, proteins and lysozyme.
The bottom layer is the mucin layer. This layer adheres to the “hydrophobic” (water-repelling) acrylic surface of the prosthesis. Therefore, for a tear layer to be able to remain on the prosthetic surface without rolling off, the “hydrophilic” (water-attracting) mucin layer is necessary.
A deficiency of any of the three layers of the tear film can lead to a “dry eye” condition, causing anything from mild eye irritation to severe pain. Interestingly, in some cases, excessive tearing or watering of the eyes can be a symptom of a dry eye condition. This is because when, for whatever reason, there is an inadequate normal tear layer on the eye, irritation results; the latter causes an overproduction of the lacrimal gland and a flooding of lacrimal fluid into the eye.
Besides excessive tearing, symptoms associated with dry eyes can include the following:
- eye irritation, scratchiness, grittiness, or pain,
- redness of the conjunctival tissue,
- a burning sensation in the eye,
- a feeling of something in the eye,
- eyes that feel “glued shut” after sleeping,
- excess mucosal drainage, and
- discomfort wearing the prosthesis.
There can be multiple causes of a dry eye condition for a prosthetic eye wearer:
- lid or blinking problems,
- reading or working at a computer screen for long periods of time,
- medications like antihistamines, oral contraceptives, beta blockers, diuretics, tranquilizers, pain relievers, or antidepressants,
- a dry climate (including heating and air conditioning in a home, airplane, or hotel room), wind, UV radiation, tobacco smoke, and dust,
- diseases such as rheumatoid arthritis, Sjogren’s syndrome, keratoconjunctivitis sicca, xerophthalmia, lupus erythematosus, Grave’s disease, diabetes, or scleroderma
- hormonal changes accompanying menopause,
- chemical, radiation, or thermal burns to the eye,
- vitamin A deficiency,
- aging, since the tear glands produce fewer tears as we age,
- protein adhesion to prosthetic surface,
- scratches on the prosthetic surface, or
- ill-fitting prosthesis.
A dry eye problem often can be relieved with the use of lubricating eyedrops, which are instilled daily or as needed onto the prostheic surface. These types of drops can soothe the socket, moisturize dry spots, supplement tears, and protect conjunctival tissue from further irritation. They provide comfort and a nice shiny, even tear layer over the prosthesis. They have a higher viscosity than natural tears, so they need to be insilled less frequently, often just once or twice per day. The lubrication allows for easier blinking, less drainage from the socket, and a very natural appearance.
Soothing eye drops are also available. These drops have the same viscosity as natural tears, which means they will not be as long lasting as the lubricants, but they do have soothing properties to control allergies, discomfort, itchiness, inflammation and excess mucosal drainage.
Some patients chose to try “artificial tears” type eyedrops to alleviate the sypmtoms of dry eye. These are not very successful because they do not last very long. Most “artificial tear” drops only contain saline, which evaporates very quickly. Some eyedrops contain “vasoconstrictors” (chemicals such as tetrahydrozaline or naphazoline), which constrict the conjunctival blood vessels, thereby reducing the amount of redness on the surface of the eyes. We do not recommend these drops for prosthetic eye wearers as they damage the tissue lining the anophthalmic socket.
Should you have any difficulty with your current regimine, we recommend working with your Ophthalmologist, Optometrist and your Ocularist to determine the root of your symptoms and come up with an appropriate solution. With a healthy fit of your prosthesis, frequent polishing and proper lubrication, your prosthesis should be able to fit and function well. Our goal is to provide our patients with excellent comfort and cosmesis for the most natural, realistic result possible.