Nikole Hadley, the NF Conference’s first Patient Advocate to speak, just delivered a stirring presentation to the more than 300 doctors and researchers in attendance. One of the primary goals of the NF Conference is to facilitate an understanding between the clinical and research communities. Clinicians care for patients and are not always aware of the latest advances in research, whereas researchers may not always be aware of all of the issues that face individuals who suffer from NF and can learn from the in-the-field experiences of clinicians. The Patient Advocate presentations, delivered by individuals who suffer from NF or their family members, really drive home the importance of the work that is being done and the impact that therapies will have on the NF community.
Nikole spoke of the difficulties she has had receiving a proper diagnosis. At various points throughout her struggle with NF she has been told that there was wrong with her, that she didn’t have NF because “she didn’t look like she had NF”, and that she was just looking for drugs. This despite the intense pain she suffered from and the tumors that were eventually discovered in her spine. Nikole discussed her struggle with a diagnosis as way of highlighting the importance of listening to patients and not dismissing the difficulties they face.
Since her diagnosis, doctors have found tumors in Nikole’s breast and skull and she continues to suffer from intense pain. She suffers the effects of NF daily and described it as Not Funny before striking a hopeful note and thanking the doctors for the work that they are doing.
Nikole’s story is far too common in the NF community. Misdiagnosis and a general lack of understanding among doctors exists with a prevelance that might surprise many of the well-versed members of the medical community in attendance at the Conference. Thanks to Nikole’s presentation we have all been reminded of the importance of furthering awareness and education of the disorder.
