In April 2020 the U.S. Food and Drug Administration (FDA) approved KOSELUGOTM (selumetinib) for use in children over age 2 with neurofibromatosis type 1 who have inoperable plexiform neurofibromas. This is the first drug ever approved specifically for a complication of NF Type 1. Obviously this has been huge news! The process of getting this…
Read Morebe iNFormed about MPNSTs in NF Type 1
NF Midwest has had a very important article written about Malignant Peripheral Nerve Sheath Tumors (or MPNSTs) in Neurofibromatosis Type 1. MPNSTs are cancerous and often aggressive. They develop in plexiform tumors and are believed to occur in approximately one out of ten people with neurofibromatosis type 1. It is very important that people with NF Type 1 be aware…
Read MoreGastrointestinal Tumors in NF Type 1
Dr. James Tonsgard, MD, of the University of Chicago, graciously contributed this article. The article is an overview of Gastrointestinal Stromal Tumors (GISTs), which are one of the most common tumors in the GI tract. They can occur in the stomach, small intestine and large intestine. These tumors can produce bleeding which the patient can…
Read MoreArticle: Study Shows More Fatigue in Neurofibromatosis Type 1
An interesting article was just published in the Journal of Paediatric and Child Health called “Perceived fatigue in children and young adults with neurofibromatosis type 1”. This was a small study done in the United Kingdom that compared 75 children with neurofibromatosis type 1 to their 16 unaffected siblings to determine if fatigue was more…
Read MoreOctober 2018 Slides and Transcript – Resiliency
At our October 20th, 2018 symposium, we had the pleasure of learning strategies and skills to improve resiliency and overall well-being from Eric Riklin, a man who knows the subject well both professionally and personally. Eric, who has a craniofacial condition and has had 25 surgeries from birth through the age of 22, is a…
Read MoreOctober 2018 Symposium Transcript – Neuromuscular Retraining for Facial Paralysis
At the October 2018 NF Midwest Symposium and iNFo Fair, Jackie Diels, OT, a leading authority on facial neuromuscular retraining (NMR), presented to our neurofibromatosis type 2 community. Ms. Diels discussed this non-surgical therapeutic approach to the treatment of facial paralysis, paresis, and synkinesis. This presentation provided an understanding of how the facial nerves and…
Read MoreNew Guidelines for the Care of Adults with NF1
Great news! A new, detailed clinical practice guideline has been made available on the care of adults with neurofibromatosis type 1. This was written to help physicians treat their patients with NF1 and is a great resource to share with your doctor. It’s a wonderful piece published by the The American College of Medical Genetics and Genomics (ACMG)…
Read MoreBuilding Resilience in Midlife
Living with a chronic illness can be extremely difficult. NF is no exception. The article linked in this blog post discusses “ways to bounce back from adversity” and how to cope with stressful situations. Resilience is the big topic of the article but is broken down into various coping strategies. Some of these strategies include…
Read MoreCafe Au Lait Spots and Diagnosis of NF1
The following is a blog by Dr. Luiz Rodrigues. Originally posted in Portuguese on May 7, 2017. Additions and translation were provided by Dr. Mata-Machado from the NF Clinic at University of Illinois. When a child has two or more criteria for the diagnosis of neurofibromatosis type 1 (NF1), we are almost certain that she has…
Read MoreNews: PhD Thesis Shows Lower Resistance to Insulin in Neurofibromatosis Type 1
The following is a blog post by Dr. Luiz Rodrigues. Originally posted in Portuguese on March 1, 2017. Additions and translation were provided by Dr. Mata-Machado from the NF Clinic at Amita Health/St. Alexius. Nutritionist Aline Stangherlin Martins publicly presented the findings of her research showing that insulin resistance is lower in people with Type…
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