Health Fair

 Hey! My name is Summer and I am a student a Walter Johnson Highschool. I am a part of the Red Cross, Habitat for Humanity, Maison Shalom, and  I have my own baking business. I choose the topic of Neurofibromatosis 1 or more commonly known as NF1.  NF1 also known as von Recklinghausen’s disease, is a genetic disorder characterized by the development of multiple noncancerous (benign) tumors of nerves and skin (neurofibromas) and areas of abnormal skin color (pigmentation).  NF1 is genetic there is a chance for genetic mutation, which I have. Cafe-au-lait spots are the most common visible feature of NF1. These spots are harmless and can grow to be 5 millimeters on children and 15 millimeters on adults.  Other features people with NF1 have are freckling on the body and armpits, fibromas which are little bumps found on the body that can either be under the skin or above. Also growth on the iris and tumor of the optic pathway.   

 Hey, yall welcome back! Today we’re going to do something different. Below is a quiz on NF1 that I would like for you to try to see how much you actually know. You might surprise yourself. 

https://quizlet.com/133086041/match  

Welcome back! Out of the three types of NF and schwannomatosis, NF1 is the most common one.  Everyone in 3,000 people in the world has it and are diagnosed in their childhood. Additional characteristics are that 50% of people have learning disabilities or challenges and can have scoliosis. NF1 patients can have tumors grow in the brain and other regions like the spine but most commonly in the brain. The tumors no cancerous but cause a shortage of blood to the brain because they grow on cranial nerves. 

Below is the link to a video on NF1 and a brief summary of what it is and has people who have NF1 tell their story and how it affects them. 

https://www.youtube.com/watch?v=fN0eWKkjwYo 

Regarding the treatments for NF1, it varies depending on the patient. Apart from having NF1, there are additional things patients have to do like go to specialty doctors.  Some are dermatologists, neurologists, ophamalogist, orthopedics, psychologists, oncologists, and cardiologists. NF1 can be inherited by either parent or can be a spontaneous mutation. Someone with NF1 has a 50% chance of passing it on to its offspring, and if it inherits the gene the symptoms will be visible but you won't be able to determine the severity. 

https://www.ctf.org/understanding-nf/nf1# 

Here is the article that gives brief descriptions and photos to match the symptoms and more. 

https://www.aboutkidshealth.ca/article?contentid=864&language=english 

One organization you can look at to find more information about NF1 and dedicate their studies and research to NF is the Children’s Tumor Foundation and Johns Hopkins Medicine.  The Children’s Tumor Foundation hosts an annual conference for parents of children with NF and those with it to inform them of new updates in the NF world. Also, it’s a place for families to interact and talk to each other about their journeys and etc. The CTF also puts on a fun run to help raise money and awareness for NF. 

To sum up this blog about NF1 a few things that you should leave with knowing is that 1 in 3,000 people have it and it is diagnosed in childhood. Some features or characteristics that people with NF1 have are freckling cafe a lait spots, fibromas on top or under the skin. NF1 is not cancerous but can be deadly because tumors can grow on cranial nerves that carry the blood to the brain. If you would like to learn more you can visit the Children's Tumor Foundation. 

Below is a podcast that summarizes NF1 if you would like to listen to it. 

https://drive.google.com/file/d/1-n1OtNxxzGMsWfX1kO7UYrwzH3MgpuwB/view?usp=sharing