Case Study #121 - Susan Running a Marathon

 

Susan Running a Marathon Prep Sketch

Susan Craig was diagnosed with Neurofibromatosis Type 1 at the age of two. Her mother as well as her sister, who was nine years older also had/has the condition. Susan had some learning disabilities as a child, especially in math, fine and gross motor skills and visual perception difficulties. She also suffered from depression due to difficulties with socialization. By the time she was in ninth grade, her parents were told she needed to find something to live for, or they would lose her. She always wanted to take martial arts, so that’s what she began to do, and she remains active in Tae Kwon Do to this day and is a 3rd Dan black belt. As part of her martial arts training, her instructor encouraged her to run, and she soon discovered she had a talent for that also, including running cross country and track in college. 

After college, Susan ran a couple of marathons. At the age of twenty three, she gave birth to a son named Matthew who also had NF1. At the age of four, Matthew would pass away from Juvenile Myelomonocytic Leukemia and T-cell Lymphoma, both linked to NF1. After his passing, she felt a great need to do something to make a difference. She ran the Honolulu Marathon for Leukemia and Lymphoma Society and was able to raise $5000. She has run well over 50 marathons since then, including the St. Jude Marathon and Boston Marathon multiple times, as well as the New York City Marathon. She has also competed in mountain races in the past, but increasing difficulties with balance has necessitated discontinuing competition in mountain or trail events. Susan is still a bit shy until she gets to know you. She also has difficulty with navigating in unfamiliar places. She has some muscle weakness, scoliosis, and ataxia, but none of that stops her from leading a very happy and active life. To her, the greatest satisfaction in life comes from helping/encouraging others.

Case Study #120 - Oliver Advocating for the NF Community

Oliver Advocating for the NF Community sketch

Oliver was born in Cape Town, in South Africa in 1982, and is the oldest of two children. Oliver and his brother were both diagnosed with Neurofibromatosis (NF) at birth and inherited it from their father. NF, particularly type 1, which is the type that they have, is a rare condition characterised by the presentation of tumours which occur at the nerve endings. These appear as little bumps and lumps under the skin. The smaller tumours are called neurofibromas and the larger tumours which cause craniofacial differences are called Plexiform fibromas. Oliver has had both types of tumours. Oliver was born with a plexiform fibroma over his right eye, which grew over time through childhood and into adolescence and yound adulthood. This resulted in a droopy eye. Successive rounds of neuropsurgery were performed on Oliver to debulk the tumour, but because they were trying to preserve the right eye, the tumour kept growing back. In 2022, Oliver had craniotomy surgery called to remove the right eye and finally the tumour totally. Because of all the damage the tumour caused, he had a PEAK or plastic skull inserted to help with symmetry or cosmesis. Apart from all the brain surgery, Oliver has had multiple surgeries to remove the neurofibromas when they have become too big. Surgery is a way of life for people with NF. Oliver has faced a lot of discrimination because he looks different. He now campaigns on social media to raise awareness for the joint communities of people living with NF and Visible Differences. He is a motivator, speaker, writer and content creator. His full time day job is as a Mental Health Crisis Worker for the National Health Service in the United Kingdom.