Questions From Individuals Outside the NF Clinic

In this month’s post, I’d like to explain a new method I’ve established for responding to the many emails I receive from individuals from all over the world with medical questions about their children whom I have not seen clinically.  Most of these email questions are from parents who are concerned that skin pigmentation on their children might be café-au-lait spots that can be indicative of NF. These emails are often accompanied by photos of the skin spots, which very often are not of high enough quality to clearly see the spots. In the past, I have tried to answer these emails in a general way as best as possible, although an email exchange allows for only limited information to be shared. 

I certainly understand that parents often experience anxiety related to these questions and that many people live in areas where a clinician with experience in NF is not available. Also, there often are long wait times to get into a specialty clinic.  While I empathize with these parents’ concerns and need for guidance, it isn’t possible for me to provide medical advice to someone whom I have not seen clinically. When I perform a clinical evaluation of a child with café-au-lait spots, I include a comprehensive physical exam as well as a medical and family history.  As such, my clinical impressions are based on much more information than can be provided in an email exchange.

As a way to provide concerned parents with general information that might be helpful, I’ve written a brief statement about NF and café-au-lait spots that I will now forward to individuals who send me email questions about skin pigmentation and other NF-related concerns. Although I’m unable to reply to these questions with specific information, I’m hoping that the statement I’ve prepared will provide helpful information and initial guidance. If I receive frequently asked questions that aren’t addressed in the statement, I can always include additional information in the statement as well as provide these updates in a future NF blog. 

Questions from Physicians and NF Clinic Patients

Because we have an established and well-known NF Clinic, I often also receive email questions from physicians regarding their patients, which I do my best to answer. In this situation, I’m not providing medical advice, and the contacting physician is taking responsibility for providing care to the patient. In these situations, we also often review imaging or other test results submitted by physicians seeking guidance for their patients.

For patients with whom we already have an established clinical relationship, we’re glad to answer questions. Because email is not the preferred communication method due to privacy and security concerns, we encourage our patients to either call the NF Clinic or use the UAB Patient Portal, which we check regularly. The patient portal is a secure and efficient way for patients to ask questions or request and appointment, and we encourage all of our patients to register for the portal as a way to enhance and facilitate communication with the NF Clinic.  Any who need help in registering can call the clinic for assistance.