The following FAQ is an excerpt from an email received a number of years ago, but one which is representative of the kind of communications Dr. Edwin Stone still receives today.
Years ago, Dr. Stone had more flexibility in his schedule in terms of being able to personally respond to inquiries such as this one. Due to increased awareness, the demand for genetic testing has escalated tremendously, as have Dr. Stone's responsibilities as Director of both the Carver Family Center for Macular Degeneration and the John and Marcia Carver Nonprofit Genetic Testing Laboratory. While his desire to personally respond to each and every person who tries to make contact with him will always remain the same, his ability to do so has declined drastically due to the demands on his time.
It is still possible to arrange for an appointment with Dr. Stone as he has clinic one day a week. For more information contact his scheduling department at (319) 356-2852. All other inquiries should be emailed directly to us. Dr. Stone’s team, his colleagues in the Carver Lab, will respond to your inquiry as soon as possible.
Dear Dr. Stone,
Two of my children have been diagnosed with an inherited eye disease. So far we have seen two specialists and both physicians have recommended that we visit you for yet another opinion as we still have some unanswered questions.
There is no history of visual problems in either my family or my husband’s that we are aware of. We are wondering if there is anything that can be done to improve their vision. Would it be worth our effort to visit you and have more testing done? Also, if you would like a copy of their records to view, I will be happy to send them to you. I have all the records from the very first time they went to the eye doctor.
Please email me back and let me know something. I’ll be waiting to hear from you. Thanks for your time.
Dear Concerned Patient,
Thank you for writing to me about your children. I understand your concern and your desire to know something more definitive about what they can expect to happen (or not happen) to their vision in the future.
Let me begin by explaining some of the inherent difficulties involved in working with families like yours via email, mail or telephone.
First, any advice that I or any other physician would give you is absolutely dependent on the accuracy and precision of the diagnosis. The term you’ve used to describe your children’s diagnosis is used to refer to a pretty wide range of conditions and an equally wide range of outcomes and inheritance patterns. Most people, including myself, would be reluctant to offer any thoughts about your family’s specific situation based upon the level of detail that you included in your email – for fear of giving you incorrect information which is actually worse than little information.
While I appreciate your willingness to share your children’s records with me the limitation with this is that reviewing and interpreting a big stack of records (and communicating the results of such a review to the family in a meaningful way) is very time consuming. The internet is a very big place and it would be very difficult for me to personally evaluate and respond to all of the queries of this type that I receive – especially in a timely fashion – even if I didn’t see any of my own patients or direct the activities of my research lab.
I really appreciate your willingness to travel all the way to Iowa City to see me. The advantages of that approach are that I could see your children’s eyes for myself and answer all of your questions in person during a regularly scheduled clinic visit. My problem with enthusiastically recommending this option to you is that you have already seen two doctors. There is quite a bit that is still unknown about inherited retinal conditions and there is the possibility that there would still be some uncertainty about the diagnosis and the prognosis for your children even if I could see them in person.
If you do choose to come see me, I hope that you will understand that there will likely still be some questions remaining in your mind (and mine) after such a visit.
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