As a 30+ year member of the St. Joseph Lions Club, I have a many volunteer jobs. For example, each year I help with the publicity of a major fundraising event, The Arts and Craft Show for which I take photographs and manage the Club’s Facebook page. Yesterday, November 3, 2012 was the 7th year of our Club’s “Big Show”, where over 100 artists and crafters come to display their wares and offer them for sale to the public. Our Club rents out space at the St. Joseph High School Field House and collects a dollar donation at the door.
With about 2,000 local folks turning out for the show there is always lots to photodocument, but my heart went out to this little girl who sat and smiled for her face painting. Her name is Kaitlyn. You see what I did not realize at the moment of capturing this photo was that Kaitlyn suffers from a rare and serious medical condition known as neurofibromatosis. This condition can affect as many as 1 in 2,500 births and involve uncontrolled growth of tumors along the nervous system. It was only after her mother’s permission was granted to use her photo that I learned about Kaitlyn’s battle with this potentially deadly disease which can lead to brain tumors, deafness, blindness and death. Her mother described Kaitlyn is a real trooper and after multiple chemotherapies for cancer and surgery to address brain tumors, she is now gradually losing her vision and needs frequent trips to the eye doctor. Kaitlyn’s mom did not know who I was, other than a St. Joseph Lion, and after Kaitlyn’s face painting was completed she came up to me and gave me an informational card entitled: NF Michigan, the Network serving Neurofibromatosis Families. After hearing more, my heart went out to Kaitlyn and her family, I told her mom that in addition to being a Lion, I’m a children’s eye doctor and that I would be happy to help Kaitlyn in any way I could at no charge.
As a pediatric developmental optometrist I’ve worked with thousands of children and families over the years who struggle with vision problems. In my practice that is dedicated to developmental vision and vision therapy, only about 20-25% in treatment present with a health related complication that has impacted that child’s visual development. The remaining 75-80% majority of children I see have had no health issues, however struggle with a complex array of developmental visual dysfunctions that interfere with the child’s ability to function effectively in many areas of life, but most commonly in the classroom and in learning.
This majority of healthy children also typically often have unrestricted visual acuity (eye sight 20/40 or better) yet have serious visual problems that if not detected and treated can thwart their ability to progress academically, emotionally and even physically. Even more importantly as a referral-based practice, unless these children are seen by a doctor who does a careful case history, comprehensive eye and vision examination, diagnoses of the condition, prescribes glasses if needed and/or makes the appropriate referral for vision therapy treatment, may have undetected vision problems that can cascade into reading and learning problems.
I opened this post with a story of a little girl who has a rare and serious health problem that will have a serious impact on her life, a condition known as neurofibromatosis. The course of treatment for Kaitlyn will be difficult and there is uncertainty, but each one of us can help! How? Simply by increasing awareness of this condition, by being social and passing this information on to family and friends. As stated on the back of the card that Kaitlyn’s mother handed me: Neurofibromatosis! A big word! Lots of syllables! Lots of problems! Pass the word! www.nfsupport.org
I’m closing this post with another call to action. That is the call to increase awareness of children who struggle to learn. They have been identified by their school system (in the US) with a need for an Individualized Education Plan (IEP). What’s more, now we have a recent study conducted by Ohio State University and published in the latest Journal of Behavioral Optometry Volume 23/2012/number4, entitled, “Vision Problems of Children with Individual Education Programs”. More to come on the serious public health implications from this research in future posts, but I’ll leave you with the words stated by the researchers in their conclusions…“There is considerable association between ocular anomalies and poor school performance. These problems are illustrated by the high prevalence of a variety of eye problems experienced in patients with IEPs. In fact, only 29.8% of the IEP patients (of the 255 in this study) did not require any treatment. Out of the 179 IEP patients who required some form of treatment, 124 (69.3%) would have passed a distance visual acuity screening program. They may not have received the treatment necessary to eliminate the potential visual obstacles that may harm a child’s ability to learn. Inadequate vision may cause children to become frustrated with learning, enhancing the likelihood of need for special education or underachieving . These children may develop a negative self-image, may exhibit behavior problems, and may ultimately drop out of school.”
So what can you do?
If you are a teacher, insist that any child who has an IEP be seen by an eye doctor who will provide a thorough vision evaluation and provide you with feedback about the results.
If you are a parent, whose child struggles in reading and learning and/or has an IEP, it is imperative that you seek help by a doctor who is thorough, enjoys working with children and either provides office-based vision therapy or will refer you to a qualified doctor who provides office-base optometric vision therapy.
If you are a primary care optometrist or ophthalmologist, make sure you take a thorough case history and ask if the child has any learning problems. For further details, if you have questions consult the AOA practice guideline entitled: Care of the patient with Vision Related Learning Problems.
But most importantly, after you have read this post pass it! Let’s promote public awareness and open our eyes to serious vision problems in children!
Dan L. Fortenbacher, O.D. ,FCOVD