Frank Buono PhD, from the Department of Psychiatry at Yale School of Medicine and longtime member and supporter of NF Midwest, just published an article on pain and neurofibromatotis type 1 in the Journal of Pain Research called Pain symptomology, functional impact, and treatment of people with Neurofibromatosis type 1.
Thank you to those in the NF Midwest community who stepped forward to help with this study when we put out the call to beta-test the survey and a HUGE thank you to Dr. Buono for his incredible work!
The primary goal of this study was to evaluate pain symptoms in a sample group of adults with NF1 to determine how often they have pain and whether alternative treatments (such as yoga, acupuncture, supplemental vitamins) help.
This research is helpful and informative for clinicians and scientists as pain is often under recognized by researchers and physicians treating patients with NF1. Dr. Buono’s findings show, that individuals with NF1 report higher pain levels than previously published, and that their pain is frequently more severe than some forms of cancer. Additionally, few individuals routinely use complementary or alternative treatments to treat their pain symptoms. Instead they use medications or surgical procedures. Lastly, the current study is one of the largest studies for adults with NF1 ever published.
As with many studies, there are some limitations and biases to the results, but this study demonstrates what many in the NF1 community have known forever…that NF1 can cause pain.
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