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